Articles
- Tory, H., Zurakowski, D., Kim, S. et al. Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.. Pediatr Rheumatol , 2020; 18,5
- Cellucci T, Van Mater H, Graus F, et al. Clinical approach to the diagnosis of autoimmune encephalitis in the pediatric patient. Neurol Neuroimmunol Neuroinflamm, 2020; Apr 15;7(4)
- Amarilyo, G., Rothman, D., Manthiram, K. et al. Consensus treatment plans for periodic fever, aphthous stomatitis, pharyngitis and adenitis syndrome (PFAPA): a framework to evaluate treatment responses from the childhood arthritis and rheumatology research alliance (CARRA) PFAPA work group. Pediatr Rheumatol , 2020; 18,31
- Balevic, S., Hornik, C., Green, T. et al. Hydroxychloroquine in Patients with Rheumatic Disease Complicated by COVID-19: Clarifying Target Exposures and the Need for Clinical Trials. The Journal of Rheumatology , 2020 ; Vol. 47, Issue 6
Abstracts
- Vega-Fernandez, P., et al. Novel Ultrasound Image Acquisition Protocol and Scoring System for the Pediatric Ankle. 2020 CARRA Abstracts at ACR
- Correll, C., et al . Alternative Dosing of Biologic Therapies Is Frequent Among Children with Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry. 2020 CARRA Abstracts at ACR
- Verstegen, R., et al . Variations in Adalimumab and Etanercept Dosing in Juvenile Idiopathic Arthritis and Their Effect on Treatment Outcome: A Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry Study. 2020 CARRA Abstracts at ACR
- Foeldvari, I., et al . Practice Patterns for Tapering Medications in the Treatment of JIA-associated Uveitis. 2020 CARRA Abstracts at ACR
- Janow, G., et al.. Trends in Timing of Biologic Use for Treatment of Systemic Juvenile Idiopathic Arthritis in the CARRA Registry. 2020 CARRA Abstracts at ACR
- Li, S., et al. . Capturing the Range of Disease Involvement in Localized Scleroderma: The Total Morbidity Score. 2020 CARRA Abstracts at ACR
- Li, S., et al. . Reliability and Validity of a New Skin Activity Measure for Localized Scleroderma. 2020 CARRA Abstracts at ACR
- Glaser, D., et al. . Three-Dimensional Analysis of Facial Asymmetry in Craniofacial Scleroderma. 2020 CARRA Abstracts at ACR
- Danguecan, A., et al.. Using a Patient-Engaged Approach to Identify Cross-Cutting Disease Factors Impacting Mental Health in Youth with Rheumatologic Disease. 2020 CARRA Abstracts at ACR
- Kimura, Y., et al. . The Childhood Arthritis and Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA Study: Report of Primary Study Outcomes. 2020 CARRA Abstracts at ACR
- Schanberg, L., et al.. A Randomized, Double-Blind, Placebo-Controlled Study of Anakinra in Pediatric and Adult Patients with Still’s Disease. 2020 CARRA Abstracts at ACR
- Smitherman, E., et al. . Sociodemographic and Clinical Predictors of Childhood-Onset SLE Disease Activity in the Childhood Arthritis and Rheumatology Research Alliance Registry. 2020 CARRA Abstracts at ACR
- Cannon, L., et al. . Elucidating Research Priorities in Childhood-Onset Systemic Lupus Erythematosus: A Qualitative Study. 2020 CARRA Abstracts at ACR
- Vazzana, K., et al. . Principles of Pediatric Lupus Nephritis in a Contemporary Multi-Center Cohort. 2020 CARRA Abstracts at ACR
- Chalhoub, N., et al. . Developing a Standardized Corticosteroid Dosing Regimen in Pediatric Proliferative Lupus Nephritis. 2020 CARRA Abstracts at ACR
- Sabbagh, S., et al. . Risk Factors Associated with Pneumocystis Jirovecii Pneumonia in Juvenile Myositis in North America. 2020 CARRA Abstracts at ACR
- Mruk, V., et al. . Improving Teratogenic Medication Consent and Sexual Activity Screening in Adolescent and Young Females: A Pediatric Rheumatology Reproductive Health Initiative. 2020 CARRA Abstracts at ACR
Articles
- Angeles-Han, S. et al. Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans for Juvenile Idiopathic Arthritis-Associated and Idiopathic Chronic Anterior Uveitis. Arthritis Care Res (Hoboken), 2019; Apr;71(4):482-491
- Arkin, L. et al. Practice-Based Differences in Pediatric Discoid Lupus Erythematosus. British Journal of Dermatology, 2019; Feb 15. doi: 10.1111/bjd.17780. [Epub ahead of print]
- Knight, A. et al. Gaps in Mental Health Care for Youth With Rheumatologic Conditions: A Mixed Methods Study of Perspectives From Behavioral Health Providers. Arthritis Care Res (Hoboken), 2019; May;71(5):591-601
- Kushner, C., et al. Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in paediatric cutaneous lupus among paediatric dermatologists and rheumatologists. British Journal of Dermatology, 2019; 180, 1, (20-21)
- Neely, J. et al. The Association of Short-term Ultraviolet Radiation Exposure and Disease Severity in Juvenile Dermatomyositis. Arthritis Care Res (Hoboken), 2019; Feb 4. doi: 10.1002/acr.23840. [Epub ahead of print]
- Schanberg, L. et al. Toward Accelerated Authorization and Access to New Medicines for Juvenile Idiopathic Arthritis. Arthritis & Rheumatology, 2019;
- Wu, E., et al. Baseline Description of the Juvenile Localized Scleroderma Subgroup From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. ACR Open Rheumatology, 2019; 1: 119-124
- Weiss, J. et al. Demographic, clinical, and treatment characteristics of the juvenile primary fibromyalgia syndrome cohort enrolled in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. Pediatric Rheumatology, 2019; July, 17:51
- Ardoin, S. et al. Research priorities in childhood-onset lupus: results of a multidisciplinary prioritization exercise. Pediatric Rheumatology, 2019; 17:32
- Connelly, M. & Weiss, J. et al Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases. Pediatric Rheumatology, 2019; November, 17:72
Abstracts
- Beelen, J., et al. Developing CTPs for Anti-NMDA Receptor Encephalitis. CARRA Annual Scientific Meeting, April 2019
- Goh, Y., et al. Research Coordinator Efforts and Impact on Participant Recruitment in the CARRA Registry: 2015-2018. CARRA Annual Scientific Meeting, April 2019
- Hersh, A., et al. A Single Center Study of the Presentation, Disease Course and Treatment of Childhood Onset Rheumatoid Arthritis. CARRA Annual Scientific Meeting, April 2019
- Horton, D., et al. Stopping Medicines for Inactive Juvenile Idiopathic Arthritis: What do Patients and Families Consider?. CARRA Annual Scientific Meeting, April 2019
- Johnson, K., et al. Correlates of Health Self-management among youth with jSLE: An update. CARRA Annual Scientific Meeting, April 2019
- Kim, S., et al. Overview of the New Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry of Juvenile Dermatomyositis Patients Enrolled in the First Year. CARRA Annual Scientific Meeting, April 2019
- Ringold, S., et al. The CARRA STOP-JIA (Start Time Optimization of Biologic Therapy in Polyarticular JIA) Study: Patient Characteristics, Patient Reported Outcomes and Consensus Treatment Plan Choices. CARRA Annual Scientific Meeting, April 2019
- AlAhmed, O., et al. Improving Eye Screening Among Pediatric Rheumatology Patients Receiving Hydroxychloroquine: Experience of a Quaternary Care Center. CARRA Annual Scientific Meeting, April 2019
- Lee, H., et al. Partnering with Patients and Families to Coproduce Better Care and Outcomes. CARRA Annual Scientific Meeting, April 2019
- Lewis, K., et al. The Intersection between Pain, Fatigue, and Cardiovascular Risk in Teens with Juvenile Idiopathic Arthritis: A Metabolomics Pilot Study. CARRA Annual Scientific Meeting, April 2019
- Goh, Y., et al. Development and Evaluation of a Research Coordinator Mentoring/Coaching Program. CARRA Annual Scientific Meeting, April 2019
- De Ranieri, D., et al. Subclinical Synovitis in Oligoarticular JIA. CARRA Annual Scientific Meeting, April 2019
- Crayne, C., et al. IVIg-Refractory Kawasaki Disease: Distilling the Literature to Predict Outcomes 26. CARRA Annual Scientific Meeting, April 2019
- Beelen, J., et al. Improving Care for Children with Autoinflammatory Diseases: CARRA-Sponsored Network Building. CARRA Annual Scientific Meeting, April 2019
- Beelen, J., et al. Management of TMJ Arthritis; Eminence or Evidence. CARRA Annual Scientific Meeting, April 2019
- Beukelman, T., et al. Characteristics of Patients Enrolled in the FiRst Line Options for Systemic JIA Treatment (FROST) Consensus Treatment Plan Study. CARRA Annual Scientific Meeting, April 2019
- Boneparth, A., et al. Skin-biopsy Evidence of Decreased Epidermal Neurite Density in Juvenile Fibromyalgia. CARRA Annual Scientific Meeting, April 2019
- Brown, R., et al. Reintroduction of DMARDS and Biologics in Pediatric Rheumatology Patients with Histoplasmosis. CARRA Annual Scientific Meeting, April 2019
- Brunner, H., et al. Long-Term Safety of Subcutaneous Tocilizumab Administration in Systemic and Polyarticular Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2019
- Chan, A., et al. Children with sudden onset neuropsychiatric symptoms: inflammation markers, arthritis, enthesitis and concurrent autoimmune/inflammatory diseases. CARRA Annual Scientific Meeting, April 2019
- Chan, A., et al. Prevalence of Pain Amplification and Fibromyalgia among Pediatric Patients with Abrupt-onset Psychiatric Symptoms. CARRA Annual Scientific Meeting, April 2019
- Chow, A., et al. Assessing Oral Health and Microbiome Dysbiosis in Juvenile Dermatomyositis. CARRA Annual Scientific Meeting, April 2019
- Li, S., et al. Development of a Mobile App to Track Disease Activity in Juvenile Localized Scleroderma. CARRA Annual Scientific Meeting, April 2019
- Mannion, M., et al. Comparing Biologic Switching Among JIA Patients by Reason for Discontinuation: A Cohort Study in the Childhood Arthritis and Rheumatology Research Alliance Registry. CARRA Annual Scientific Meeting, April 2019
- Stingl, C., et al. Gene Expression Signatures of Early Treatment Response in Newly Diagnosed Patients with Juvenile Dermatomyositis. CARRA Annual Scientific Meeting, April 2019
- Tesher, M., et al. Utility of the Pain Symptom Assessment Tool (PSAT) in assessing for fibromyalgia in JIA patients. CARRA Annual Scientific Meeting, April 2019
- Torok, K., et al. Expanded autoantibody testing in pediatric scleroderma. CARRA Annual Scientific Meeting, April 2019
- Vasquez-Canizares, N., et al. Von Willebrand Factor is Localized in the Extravascular Tissue of Patients with Juvenile Scleroderma. CARRA Annual Scientific Meeting, April 2019
- Veiga, K., et al. Understanding Langerhans Cell ADAM17 Levels in Systemic Lupus Erythematosus: Potential Contributor to Photosensitivity. CARRA Annual Scientific Meeting, April 2019
- Wenderfer, S., et al. LN-Autoantibodies: a Midwest Pediatric Nephrology Consortium Study of Pediatric-onset Lupus Nephritis. CARRA Annual Scientific Meeting, April 2019
- Wise, K., et al. Improvement of Teratogenic Medication Risk Counseling in Adolescent Females in a Rheumatology Clinic Setting. CARRA Annual Scientific Meeting, April 2019
- Woolnough, L., et al. Ultrasound Evaluation of Oligoarticular Juvenile Idiopathic Arthritis Patients Pre and Post-Treatment: A Pilot Study. CARRA Annual Scientific Meeting, April 2019
- Yi, P., et al. Transition of Pediatric Lupus Patients to Adult Care: A Three-year Follow-Up; Outcomes from a Single Center. CARRA Annual Scientific Meeting, April 2019
- Son, M., et al. Demographic and Clinical Characteristics of Patients with Systemic Lupus Erythematosus and Related Conditions in the CARRA Registry: An Update. CARRA Annual Scientific Meeting, April 2019
- Schutt, C., et al. Dermal Histopathological Correlation with Genetic Signatures of Pediatric Localized Scleroderma 73. CARRA Annual Scientific Meeting, April 2019
- Rubinstein, T., et al. Research Priorities for Addressing Mental Health Needs of Pediatric Patients with Rheumatologic Disease. CARRA Annual Scientific Meeting, April 2019
- McDonald, J., et al. Health-Related Quality of Life and Functioning in Children with JIA, JIA-Associated Uveitis, and Other Uveitis Types. CARRA Annual Scientific Meeting, April 2019
- Moussa, T., et al. Role of Ultrasound-guided Intra-articular Corticosteroid Injections in Juvenile Idiopathic Arthritis (JIA): A Single Center Retrospective Study. CARRA Annual Scientific Meeting, April 2019
- Mulvihill, E., et al. Investigating the Role of Complement in Atherosclerotic Disease in Children and Adults with Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2019
- Neely, J., et al. Gene Expression Meta-analysis in Dermatomyositis Identifies Dysregulated Immune and Metabolic Pathways in Muscle and Skin. CARRA Annual Scientific Meeting, April 2019
- O'Neil, K., et al. Hormone and Adipokine Effects on cSLE Disease Activity During Puberty. CARRA Annual Scientific Meeting, April 2019
- Oliver, M., et al. Current Practices in the Management of TNFi failure in Juvenile Spondyloarthritis. CARRA Annual Scientific Meeting, April 2019
- Paul, S., et al. Incidence of hypercalciuria and hematuria in Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2019
- Roberts, J., et al. A Single Center Experience with Weekly Adalimumab versus Infliximab Therapy in Refractory Uveitis. CARRA Annual Scientific Meeting, April 2019
- Rosenwasser, N., et al. Development of Novel Urinary Biomarkers for Lupus Nephritis. CARRA Annual Scientific Meeting, April 2019
- Zhao, Y., et al. Development of CROMRIS (ChRonic nonbacterial Osteomyelitis MRI Scoring) Tool and Evaluation of its Interrater Reliability. CARRA Annual Scientific Meeting, April 2019
- Beukelman, T., et al. Patients with Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry: Clinical Characteristics and Inception Cohorts. CARRA Annual Scientific Meeting, April 2019
- Muscal, E., et al. Anakinra Usage in Febrile Infection Related Epilepsy Syndrome (FIRES): An International Retrospective Cohort Study. CARRA Annual Scientific Meeting, April 2019
- Furru, R., et al . Formal Depression Screening in Pediatric Rheumatology Patients with Systemic Lupus Erythematosus: A Quality Improvement Process Review. CARRA Annual Scientific Meeting, April 2019
- Hiraki, L., et al. Identifying and discovering genetic variants for monogenic lupus. CARRA Annual Scientific Meeting, April 2019
- Goh, Y., et al. Development of a Protocol and Recruitment Materials to Support Recruitment for a Multi-site Study. CARRA Annual Scientific Meeting, April 2019
- Correll, C., et al. Establishing the juvenile arthritis in Minnesota (JaMINN) study: collecting environmental and genetic data. CARRA Annual Scientific Meeting, April 2019
- Khojah, A., et al. Changes in Total Body Fat and Body Mass Index among Children with Juvenile Dermatomyositis. CARRA Annual Scientific Meeting, April 2019
- Smitherman, E., et al. Evaluating Disease Activity Outcomes for Juvenile Idiopathic Arthritis Across the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). CARRA Annual Scientific Meeting, April 2019
- Buckley, L., et al. Decreasing Outpatient Telephone Calls by Standardizing the Obtainment and Review of Laboratory Tests: A Quality Improvement Initiative. CARRA Annual Scientific Meeting, April 2019
- Knight, A., et al. Immodulatory Medication Use for Youth with Newly-Diagnosed Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2019
- Angeles-Han, S., et al. Measuring vision-related function and quality of life in children with uveitis. CARRA Annual Scientific Meeting, April 2019
- Cunningham, N., et al. A Patient-Engaged Approach to Refining a Psychological Therapy for Individuals with Childhood-Onset Lupus. CARRA Annual Scientific Meeting, April 2019
- Randell, R., et al. Pediatric Sjogren Syndrome: A Single-Center Experience. CARRA Annual Scientific Meeting, April 2019
- Brunner, H., et al. Disability and Health-Related Quality of Life Outcomes in Patients With Systemic or Polyarticular Juvenile Idiopathic Arthritis Treated With Tocilizumab in Randomized Controlled Phase 3 Trials. CARRA Annual Scientific Meeting, April 2019
- Ogbu, E., et al. Echocardiogram Screening in Pediatric Systemic Lupus Erythematosus and Mixed Connective Tissue Disease – A Single-Center Multi-disciplinary Quality Improvement Initiative to Improve Cardiovascular Health. CARRA Annual Scientific Meeting, April 2019
- Stones, S., et al. Working For Better Care And Treatment Of Paediatric-Onset Rheumatic And Musculoskeletal Diseases: Introducing The European Network For Children With Arthritis. CARRA Annual Scientific Meeting, April 2019
- Hausmann, J., et al. Feasibility of Using Wearable Thermometers to Improve Diagnosis and Treatment of PFAPA. CARRA Annual Scientific Meeting, April 2019
- Springer, M., et al. Anti-thyroid Antibodies Following Subcutaneous Abatacept Treatment in Children and Adolescents With Polyarticular JIA. CARRA Annual Scientific Meeting, April 2019
- Hui-Yuen, J., et al. Differences in Chromatin Architecture in Treatment Naïve Pediatric Lupus Patients. CARRA Annual Scientific Meeting, April 2019
- Rubinstein, T., et al. Examining Risk Factors Associated with Depression and Anxiety in Youth with Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2019
- Patrick, A., et al. Effector T cells: An Assessment of Activity in Polyarticular Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2019
- Kim, S., et al. Planning Grant: Crowdsourcing and Improving Assessment of Skin Disease in Pediatric Rheumatology. CARRA Annual Scientific Meeting, April 2019
- Mason, S., et al. Study Update on Discontinuation of Maintenance Mycophenolate Mofetil Therapy in Pediatric Lupus Nephritis. CARRA Annual Scientific Meeting, April 2019
- Brescia, A., et al. Differential Expression of Bone Morphogenetic Protein Antagonists and Chondrocyte Maturation Markers Provide Insight into the Role that Fibroblast-like Synoviocytes from Patients with Juvenile Idiopathic Arthritis Play in Growth Disturbances within the Jo. CARRA Annual Scientific Meeting, April 2019
- von Scheven, E., et al. Patients Advocates and Rheumatology Teams Network for Research and Service: Researchers and Patient Families Working Together To Conduct Research That Matters, To You. CARRA Annual Scientific Meeting, April 2019
- Ardalan, K., et al. Parent Perspectives on Addressing Emotional Health for Youth with Juvenile Myositis: A Qualitative Focus Group Study. CARRA Annual Scientific Meeting, April 2019
- Whittingslow, D., et al. Assessment of the TMJ in Juvenile Idiopathic Arthritis Using Acoustic Emissions Generated from Jaw Movements in Two Planes. CARRA Annual Scientific Meeting, April 2019
- Chang, J., et al. Patterns of Ambulatory Health Care Utilization among Transition-Age Youth with Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2019
- Wong, S., et al. Association of HLA-B types in juvenile inflammatory arthritis. CARRA Annual Scientific Meeting, April 2019
- Li, S., et al. Data Analysis Grant for the Juvenile Localized Scleroderma Consensus Treatment Plan Pilot Study. CARRA Annual Scientific Meeting, April 2019
- Yen, E., et al. Pediatric ANCA-Associated Vasculitis (Ped-AAV): Developing Consensus Derived Treatment Protocols (CTPs) For Pragmatic Registry-Based Comparative Evaluation. CARRA Annual Scientific Meeting, April 2019
- Lawson, E., et al. Changes in Healthcare Transition Views, Practices, and Barriers among CARRA Pediatric Rheumatology Providers from 2010 to 2018. CARRA Annual Scientific Meeting, April 2019
- Zemke, A., et al. Immunogenicity of Pneumococcal Vaccination in Patients with Childhood Onset Systemic Lupus Erythematosus (cSLE): a retrospective chart review. CARRA Annual Scientific Meeting, April 2019
- Ardalan, K., et al. Baseline Features and Outcomes of Pediatric-Onset Discoid Lupus Erythematosus: Interim Data Analysis of a Multicenter Retrospective Cohort Study. CARRA Annual Scientific Meeting, April 2019
- Saper, V., et al. Trisomy 21 and Lung Disease in Systemic Onset Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2019
- Toupin-April, K., et al. Health Care Providers’ Views of Decision-making for Pain Management among Youth with Juvenile Idiopathic Arthritis: Preliminary Results from Interviews. CARRA Annual Scientific Meeting, April 2019
- Thatayatikom, A., et al. A Potential Role of Early Sjögren’s Antibodies as a Biomarker in Seronegative Children with Sjögren Syndrome. CARRA Annual Scientific Meeting, April 2019
- Barbar-Smiley, F., et al. Immunogenicity of Pneumococcal Vaccination and Impact on Nasopharyngeal Pneumococcus Colonization in patients with Childhood Onset Systemic Lupus Erythematosus (cSLE). CARRA Annual Scientific Meeting, April 2019
- Vega-Fernandez, P., et al. Musculoskeletal Ultrasound Study In Childhood Arthritis a Limited Examination. CARRA Annual Scientific Meeting, April 2019
- Rodriguez, M., et al. Differences in Clinical Manifestations in Pre-pubertal onset SLE across different Racial/Ethnic Groups. CARRA Annual Scientific Meeting, April 2019
- Morishita, K., et al. Renal Outcomes in Pediatric Anti-Neutrophil Cytoplasmic Antibody Associated Vasculitis in the First 24-Months. CARRA Annual Scientific Meeting, April 2019
- Neely, J., et al. The Association of Short-term Ultraviolet Radiation Exposure and Calcinosis in Juvenile Dermatomyositis in the Childhood Arthritis & Rheumatology Research Alliance Registry. CARRA Annual Scientific Meeting, April 2019
- Ma, M., et al. Validation of the 1997 American College of Rheumatology (ACR) classification criteria, 2012 Systemic Lupus International Collaborating Clinics (SLICC) criteria, and the 2017 Weighted Criteria for pediatric Systemic Lupus Erythematosus (SLE). CARRA Annual Scientific Meeting, April 2019
- Mruk, V., et al. Reproductive Health Awareness and Needs: Assessment of Parents, Female Adolescents, and Young Adults with Pediatric Rheumatic Diseases. CARRA Annual Scientific Meeting, April 2019
- Chan, A., et al. HLA Findings in Youth with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). CARRA Annual Scientific Meeting, April 2019
- Lewandowski, L., et al. Hypertension and Blood Pressure Variability in Patients with Childhood-Onset Systemic Lupus Erythematosus in the APPLE Trial. CARRA Annual Scientific Meeting, April 2019
- Khojah, A. et al. Rituximab-associated Hypogammaglobulinemia in Pediatric Patients with Autoimmune Diseases. 2019
Articles
- Stevens, B., et al. Clinical characteristics and factors associated with disability and impaired quality of life in children with juvenile systematic sclerosis. Arthritis Care and Research (Hoboken), 2018; Feb 18. doi: 10.1002/acr.23547 [Epub ahead of print]
- Knight, A.M., et al. Depression Risk in Young Adults with Juvenile- and Adult-Onset Lupus: Twelve Years of Followup. Arthritis Care Res (Hoboken), 2018; Mar;70(3):475-480. doi: 10.1002/acr.23290
- Nigrovic, P., et al. Bayesian comparative effectiveness study of four consensus treatment plans for initial management of systematic juvenile idiopathic arthritis: FiRst-Line Options for Systemic juvenile idiopatic arthritis Treatment (FROST). Clinial Trials, 2018; 15(3):268-277
- Tory, H., et al. Comparing the importance of quality measurement themes in juvenile idiopathic inflammatory myositis between patients and families and healthcare professionals. Pediatric Rheumatology Online Journal, 2018; 16(1):28
- Angeles-Han, S., et al. Childhood Arthritis and Rheumatology Research Alliance consensus treatment plans for juvenile arthritis-associated and idiopathic chronic anterior uveitis. Arthritis Care and Research (Hoboken), 2018; May 28. doin: 10.1002/acr23610. [Epub ahead of print]
- Ringold, S., et al. The Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans: Toward Comparative Effectiveness in the Pediatric Rheumatic Diseases. Arthritis & Rheumatology, 2018; 70(5):669-678
- Knight, A., et al. Gaps in Mental Health Care for Youth with Rheumatologic Conditions: A Mixed Methods Study of Perspectives from Behavioral Health Providers. Arthritis Care Res (Hoboken), 2018; Jun 28. doi: 10.1002/acr.23683. [Epub ahead of print]
- Rubinstein, T., et al. Delays to Care in Pediatric Lupus Patients: Data from the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. Arthritis Care and Research, 2018; 70(3):420-427
- Challa, D., et al. Predictors of changes in disease activity among children with juvenile dermatomyositis enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry. Clinical Rheumatology, 2018; 37(4):1011-1015
- Samad, A., et al. Adiposity in Juvenile Psoriatic Arthritis. The Journal of Rheumatology, 2018; 45(3):411-418
- Hersh, A., et al. Predictors of disability in a childhood-onset systemic lupus erythematosus cohort: results from the CARRA Legacy Registry. Lupus, 2018; 27(3):494-500
- Weitzman, E., et al. Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis. Journal of Patient-Reported Outcomes, 2018; 2.pii:16. doi:1186/s41687-017-0025-02
- Kashikar-Zuck, S., et al. Pilot Randomized Trial of Integrated Cognitive-Behavioral Therapy and Neurmuscular Training for Juvenile Fibromyalgia: The FIT Tees Program. J Pain, 2018; Apr 17. pii: S1526-5900(18)30144-5. doi: 10.1016/j.jpain.2018.04.003. [Epub ahead of print]
- Harel, L., et al. The First International Conference on Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome. J Pediatr, 2018; Feb;193:265-274.e3. doi:10.1016/j.jpeds.2017.10.034.
Abstracts
- Zhao, Y., et al. Development of Standardized Assessment of the Inflammation in Bone and Soft Tissue in Chronic Nonbacterial Osteomyelitis from MRI Images. CARRA Annual Scientific Meeting, April 2018
- Lewis, K., et al. The Role of Food in the Self-Management of Pain in Teens with Juvenile Arthritis: Gender and Ethnic Differences. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Twilt, M., et al. Improving Care for Children with Autoinflammatory diseases: CARRA-sponsored Network Building. CARRA Annual Scientific Meeting, April 2018
- Alsaeid, K., et al. Systemic Treatment of Uveitis in Children: A Single Center Experience. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Li, S., et al. Working Towards Comparative Effectiveness Studies for Moderate to Severe Juvenile Localized Scleroderma: Results of a 1-Year Pilot Study of Three Methotrexate-Based Consensus Treatment Plans. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Lamot, L., et al. Variations in zinc finger protein gene might impact expression of transient receptor potential channel and receptor tyrosine kinase genes contributing to inflammasome dependent inflammatory response and development of clavicular cortical hyperostosis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Knight, A., et al. The Impact of Psychiatric Comorbidity on Health Care Utilization for Youth with SLE. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Khojah, A., et al. Kappa-Deleting Recombination Excision Circles (KREC) in B Cells: an Aid in Predicting Juvenile Dermatomyositis Response to Rituximab. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Johnson, K., et al. Preliminary Analyses Examining Correlates of Health Self-management. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Horton, D., et al. Factors Related to Sustained Discontinuation of Medications for Well-Controlled JIA in the Childhood Arthritis & Rheumatology Research Alliance Registry. 2018
- Hayward, K., et al. Supporting CARRA Early Investigators One Step at a Time: Update on the CARRA-Research and Writing Team Pilot Project. CARRA Annual Scientific Meeting, April 2018
- Harry, O., et al. Living with Childhood-onset Systemic Lupus Erythematosus: A Focus Group with Caregivers. CARRA Annual Scientific Meeting, April 2018
- Goh, Y., et al. Consenting for Biological Specimens Collection: The Healthcare Provider and Research Coordinator Perspective. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Go, E., et al. Descriptive analysis of pediatric patients with systemic vasculitis admitted to the intensive care unit of a tertiary care hospital: 10-year experience. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Dominguez, D., et al. Discovering genetic variants for early onset and familial lupus in the thousand faces of systemic lupus erythematosus (SLE). CARRA Annual Scientific Meeting, April 2018
- Cunningham, N., et al. Development of the Treatment and Education Approach for Childhood-Onset Lupus (TEACH) Intervention for Adolescents and Young Adults. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Campbell, J., et al. Case Series of Psoriasis Associated with Tumor Necrosis Factor Alpha Inhibitors in Children with Chronic Recurrent Multifocal Osteomyelitis. CARRA Annual Scientific Meeting, April 2018
- Brunner, H., et al. Identification of optimal subcutaneous doses of tocilizumab in children with systemic juvenile idiopathic arthritis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Brescia, A., et al. Validation of Synovial Fluid Biomarkers for Prediction of Extension in Oligoarticular Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Wang, C., et al. Is the Patient Global Health Assessment Reliable in Juvenile Idiopathic Arthritis?. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Brennan, E., et al. Getting a HEEADSSS in psychosocial screening: use of standardized clinic note templates for psychosocial screening in a pediatric rheumatology clinic. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Woolnough, L., et al. Longitudinal Musculoskeletal Ultrasound in Juvenile Idiopathic Arthritis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Torok, K., et al. Identifying Juvenile Scleroderma Immunophenotype Subsets. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Torres Made, M., et al. Prevalence of Psychiatric Disorders in a Transition Clinic of Adolescents with Rheumatic Diseases in México. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Tesher, M., et al. Utility of the Pain Symptom Assessment Questionnaire (PSAQ) to assess fibromyalgia in JIA patients. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Tasan, L., et al. Analyze Myositis with Ultrasound and Exercise (AMUSE)- Analysis of Baseline Data. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Son, M., et al. The Lupus Cohort in the New CARRA Registry: 10 Months of Enrollment. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Saper, V., et al. Update on Lung Disease in Children with Systemic Juvenile Idiopathic Arthritis (sJIA). CARRA Annual Scientific Meeting, April 2018
- Rubinstein, T., et al. Increased Exposure to Adverse Childhood Experiences is Associated with Arthritis in a National Sample of US Youth. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Rubinstein, T., et al. Resilience and Mental Illness in Children with Arthritis in a National Sample of US Youth. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Ringold, S., et al. Baseline Characteristics and Medication Use in Children with JIA: Results from the Childhood Arthritis & Rheumatology Research Alliance Registry. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Patrick, A., et al. Juvenile Idiopathic Arthritis Mediated by Defective GATA-binding Protein 3. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Oliver, M., et al. Clinical Disease Manifestations associated with TNF inhibitor failure in Juvenile Spondyloarthritis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Nanda, K., et al. Systemic Juvenile Idiopathic Arthritis Inactive Disease and Withdrawal of Medications: A Survey of the Childhood Arthritis and Rheumatology Research Alliance. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Mulvihill, E., et al. Higher Serum Complement C4 Levels and C4B Gene Copy Numbers Are Associated with Increased Risk for Hypertension and Significant Response to Prophylactic Atorvastatin for Atherosclerosis Prevention in Pediatric Systemic Lupus Erythematosus (pSLE). CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Moncrieffe, H., et al. Transcription Factor Set Binds Multiple Juvenile Idiopathic Arthritis Genetic Susceptibility Loci. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Mason, S., et al. Maintenance Therapy Discontinuation of Mycophenolate Mofetil in Pediatric Proliferative Lupus Nephritis: A Multi-Centered Retrospective Cohort Study. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Mandal, R., et al. Comparison of pediatric localized scleroderma (LS) to healthy pediatric controls utilizing RNA sequencing for differentially expressed genes (DEGs). CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Briggs, L., et al. Cutaneous Scarring in Neonatal Lupus: A Retrospective Cohort Study. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Boneparth, A., et al. Epidermal Nerve Fiber Density in Juvenile Fibromyalgia. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Beukelman, T., et al. Characteristics of Patients Enrolled in the FiRst Line Options for Systemic JIA Treatment (FROST) Consensus Treatment Plan Study. CARRA Annual Scientific Meeting, April 2018
- Joshi, S., et al. Does Anti-Cyclic Citrullinated Peptide (CCP) Antibody Positivity Predict Erosive Disease in Polyarticular JIA Patients? Experience from a Tertiary Care Medical Center in the US. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Barbar-Smiley, F., et al. Nasopharyngeal Pneumococcus Colonization in patients with Childhood Onset Systemic Lupus Erythematosus (cSLE). CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Lim, L., et al. Identifying Trajectories of Disease Activity States in Juvenile Idiopathic Arthritis (JIA) Early After Treatment: Shortening Time to Decision to Change Treatment. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Brunner, E., et al. Stepping It Up: The Use of Physical Activity Monitors as an Outcome Measure in Juvenile Myositis. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Mannion, M., et al. Biologic Switching Among JIA patients: A Cohort Study in the Childhood Arthritis and Rheumatology Research Alliance Registry. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Gartshteyn, Y., et al. Cell-Bound Complement Activation Products As Markers of Disease Flares in Childhood-Onset Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2018
- Morishita, K., et al. Renal Disease Course in Pediatric Anti-Neutrophil Cytoplasmic Antibody Associated Vasculitis in the First 12-Months – a Pediatric Vasculitis Initiative (PedVas) Study. CARRA Annual Scientific Meeting, April 2018
- Hui-Yuen, J., et al. Feasibility of Conducting Epigenetic Analysis in Pediatric Lupus B Cells. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Knight, A., et al. Engaging patients and parents to improve mental health for youth with rheumatologic disease. CARRA Annual Scientific Meeting, April 2018
- Bullock, D., et al. Leveraging a Patient-Powered Research Network to Understand the Impact of Adverse Childhood Experiences and Resilience on Children with Rheumatic Diseases. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Ringold, S., et al. The Childhood Arthritis and Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA Study: Interim Report of Baseline Patient Characteristics and Treatment Choices. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Horton, D., et al. Stopping Medicines for Inactive Juvenile Idiopathic Arthritis: What Do Patients and Families Consider?. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Rubinstein, T., et al. Patient and Parent Acceptability of Mental Health Screening in the Rheumatology Clinic for Youth with Systemic Lupus Erythematosus. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Correll, C., et al. Research Priorities among Parents and Families of Children with Rheumatic Disease. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Schlefman, A., et al. Chondrocyte Conditioned Media Influences TGFb and BMP Signaling Pathways in Both Normal and Juvenile Idiopathic Arthritis Fibroblast-like Synoviocytes. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Hausmann, J., et al. Continuous Temperature Monitoring to Improve Diagnosis and Treatment of PFAPA. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Halyabar, O., et al. A Collaborative Approach to Diagnosis and Treatment of HLH and MAS: A Single Center’s Approach to the Development of Evidence-Based Guidelines. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Taxter, A., et al. Optimizing the Electronic Health Record to Capture Childhood Arthritis and Rheumatology Research Alliance (CARRA) Data. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- De Ranieri, D. Subclinical Synovitis in Oligoarticular JIA: A Risk Factor for Polyarticular Disease?. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Li, S., et al. Development of a Mobile App to Track Disease Activity in Juvenile Localized Scleroderma. CARRA Annual Scientific Meeting, April 2018
- Goh, Y., et al. Development of a Systematic Approach to Identify Factors Influencing Enrollment in Pediatric Rheumatology Research. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Lewandowski, L., et al. Patients with Pediatric Onset Systemic Lupus Erythematosus in South Africa. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Benham, H., et al. A Pilot Study: Can Musculoskeletal Ultrasound (MSUS) be utilized as an Objective Measure of Disease Activity in a Consensus Treatment Plan for Patients Newly Diagnosed with Polyarticular Juvenile Idiopathic Arthritis (JIA)?. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Kushner, C., et al. Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in pediatrics. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Baxter, R., et al. High Dimensional Single-Cell Mass Cytometry Demonstrates Distinct Immune Phenotypic and Functional Signatures in Pediatric SLE and Malaria Patients. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Kim, S., et al. Planning Grant: Crowdsourcing and Improving Assessment of Skin Disease in Pediatric Rheumatology. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Ma, M., et al. Safety of belimumab in patients with adult- and pediatric-onset neuropsychiatric systemic lupus erythematosus. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- McDonald, D., et al. The Value of Ethnography in Understanding Burden of Disease and Designing Better Care Delivery Systems in Pediatric Care. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Muscal, E., et al. Enhancing Care for Children with Autoimmune Encephalitis (AE): CARRA-sponsored Multi-disciplinary Network Building. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Orrock, J., et al. Anti-transthyretin antibody positivity in pediatric patients with rheumatic disease. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Rodriguez, M., et al. The Relationship between Changes in Adipokine Levels and Disease Activity in Pubertal Children with SLE. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Sadun, R., et al. Increasing Adult Rheumatology Fellows’ Confidence and Competence in Providing Transition Care to Transferring Young Adult Rheumatology Patients. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Stern, S., et al. Towards a better understanding of childhood Sjögren syndrome: evaluation of the 2016 ACR/EULAR classification criteria for use in diagnosing Sjögren syndrome in children. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Torres Made, M., et al. Reduced-dose Rituximab in treatment of Pediatric Rheumatic diseases. CARRA Annual Scientific Meeting, April 2018
- Twilt, M., et al. Childhood Primary Angiitis of the CNS: deciphering a rare disease through international collaboration. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Vega-Fernandez, P., et al. Musculoskeletal Ultrasound Study In Childhood Arthritis a Limited Examination. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Wimalasundera, S., et al. Safety of tocilizumab in patients aged < 2 years with active systemic juvenile idiopathic arthritis treated for one year. CARRA Annual Scientific Meeting, April 2018. Pediatric Rheumatology. 2018
- Zhao, Y., et al. Pilot Study to Develop Urinary Biomarker of Disease Activity in Chronic Nonbacterial Osteomyelitis. CARRA Annual Scientific Meeting, April 2018
Articles
- Chang, J.C., et al. High Health Care Utilization Preceding Diagnosis of Systemic Lupus Erythematosus in Youth. Arthritis Care Res (Hoboken), 2017; Dec 1. doi: 10.1002/acr.23485. [Epub ahead of print]
- Orandi, A., et al. Assessment, classification and treatment of calcinosis as a complication of juvenile dermatomyositis: a survey of pediatric rheumatologists by the childhood arthritis and rheumatology research alliance (CARRA). Pediatric Rheumatology, 2017; 15:71
- Beukelman, T., et al. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months. Pediatric Rheumatology Online Journal, 2017; Apr 17; 15:30
- Zhao, Y., et al. Physicians’ Perspectives on the Diagnosis and Treatment of Chronic Nonbacterial Osteomyelitis. International Journal of Rheumatology, 2017; 2017:7694942
- Kimura, Y., et al. Pilot study comparing the Childhood Arthritis & Rheumatology Research Alliance (CARRA) systemic Juvenile Idiopathic Arthritis Consensus Treatment Plans. Pediatric Rheumatology Online Journal, 2017; 15(1):23
- Boneparth, A., et al. Clinical characteristics of children with membranous lupus nephritis: the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. Lupus, 2017; 26(3):299-306
- Kim, S., et al. Childhood Arthritis and Rheumatology Research Alliance consensus clinical treatment plans for juvenile dermatomyositis with skin predominant disease. Pediatric Rheumatology Online Journal, 2017; 15(1):1
- Zhao, Y., et al. Consensus Treatment Plans for Chronic Nonbacterial Osteomyelitis Refractory to Nonsteroidal Anti-Inflammatory Drugs and/or Active Spinal Lesions. Arthritis Care and Research (Hoboken), 2017; doi:10.1002/acr.23462. [Epub ahead of print.]
- Spencer, C., et al. Biologic therapies for refractory juvenile dermatomyositis: five years of experience of the Childhood Arthritis and Rheumatology Research Alliance in North America. Pediatric Rheumatology Online, 2017; Jun 13; 15(1):30
- Westwell-Roper, C., et al. Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinicial survey. Pediatr Rheumatol Online J, 2017; Aug 7;15(1):61. doi: 10.1186/s12969-017-0191-z
- AIE'ed, A., et al. Challenges of Diagnosing Cognitive Dysfunction with Neuropsychiatric Systemic Lupus Erythematosus in Childhood. Arthritis Care Res (Hoboken), 2017; Oct;69(10):1449-1459. doi: 10.1002/acr.23163. Epub 2017 Aug 29
- Manthiram, K., et al. Physicians' perspectives on the diagnosis and management of periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis (PFAPA) syndrome. Rheumatology International, 2017; 37(6):883-889
- Huber, A., et al. Childhood Arthritis and Rheumatology Research Alliance Consensus Clinical Treatment Plans for Juvenile Dermatomyositis with Persistant Skin Rash. Journal of Rheumatology, 2017; 44(1):110-116
- Minoia, F., et al. Development and Initial Validation of the Macrophage Activation Syndrome/Primary Hemophagocytic Lymphohistiocytosis Score, a Diagnostic Tool that Differentiates Primary Hemphagocytic Lymphohistiocytosis from Macrophage Activation Syndrome. Journal of Pediatrics, 2017; 189:72-78.e3
- Zisman, D., et al. The Juvenile Psoriatic Arthritis Cohort in the CARRA Registry: Clinical Characteristics, Classification, and Outcomes. Journal of Rheumatology, 2017; 44(3):342-351
- Phillippi, K., et al. Race, Income, and Disease Outcomes in Juvenile Dermatomyositis. Journal of Pediatrics, 2017; 184:38-44.e1
- Yen, E.Y., et al. 46-Year Trends in Systemic Lupus Erythematosus Mortality in the United States, 1968 to 2013: A Nationwide Population-Based Study. Ann Intern Med, 2017; Dec 5;167(11):777-785. doi: 10.7326/M17-0102. Epub 2017 Oct 31.
- Boneparth, A., et al. Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists. The Journal of Rheumatology, 2017; 44(11):1619-1623
- Manthiram, K., et al. Unraveling the pathogenesis of periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis through genetic, immunologic, and microbiologic discoveries: an update. Curr Opin Rheumatol, 2017; Sep;29(5):493-499. doi: 10.1097/BOR.0000000000000418
- Horton, D., et al. Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystematic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance. Journal of Rheumatology, 2017; 44(3):352-360
Abstracts
- Wahezi, D., et al. Assessment of Endothelial Dysfunction and Atherogenic Risk Factors in Children with Juvenile Dermatomyositis. 2017 Pediatric Rheumatology Symposium. May 2017.
- Buckley, L., et al. Improving Outcomes Using a Treat to Target Approach and Clinical Decision Support in Polyarticular Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Stoll, M., et al. Akkermansia Muciniphila May Be Permissive to Arthritis in the K/BxN Mouse Model of Arthritis. 2017 Pediatric Rheumatology Symposium. May 2017.
- Arkin, L., et al. Practice-Based Differences Between Pediatric Rheumatologists and Dermatologists Caring for Children with Discoid Lupus. 2017 ACR/ARHP Annual Meeting. 2017 ACR/ARHP Annual Meeting. November 2017.
- Maksymowych, M., et al. Validation of Online Calibration Modules for the Spondyloarthritis Research Consortium of Canada MRI Scores Based on Real-Time Experiential Learning. 2017 ACR/ARHP Annual Meeting. November 2017.
- Stinson, J., et al. An Internet-based Self-management Program for Adolescents with Juvenile Idiopathic Arthritis – A Randomized Controlled Trial. 2017 ACR/ARHP Annual Meeting. November 2017.
- Hoyt, K., et al. The Lymphocyte Repertoire in Juvenile Dermatomyositis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Stinson, J., et al. A Randomized Controlled Trial (RCT) of an Internet-Based Self-Management Program for Adolescents with Juvenile Idiopathic Arthritis (JIA). 2017 ACR/ARHP Annual Meeting. November 2017.
- Wright, J., et al. Knowledge Translation in Juvenile Idiopathic Arthritis in Canada: A Focus on Parents of Children with JIA. 2017 ACR/ARHP Annual Meeting. November 2017.
- O'Neil, K., et al. Effects of Puberty on Systemic Lupus Erythematosus: Results of a multi-center prospective longitudinal observational study in children entering puberty with SLE. 2017 ACR/ARHP Annual Meeting. November 2017.
- Cooper, J., et al. Corticosteroid Regimen Use in the Pilot Study of Consensus Treatment Plans for Induction Therapy in Childhood Proliferative Lupus Nephritis. 2017 Pediatric Rheumatology Symposium. May 2017.
- Stinson, J., et al. Feasibility Testing of An Internet-Based Psycho-Educational Game for Children with Juvenile Idiopathic Arthritis and Their Parents. 2017 ACR/ARHP Annual Meeting. November 2017.
- Grevich, S., et al. Gastrointestinal Microbiota in New-Onset Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Ombrello, M., et al. Examination of Reported Risk Loci from Candidate Gene Studies of Systemic Juvenile Idiopathic Arthritis Identifies Link between IL1RN Variation and both Disease Susceptibility and Response to Interleukin-1 Directed Therapy. 2017 Pediatric Rheumatology Symposium. May 2017.
- Ringold, S., et al. Baseline characteristics of the first 123 patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA comparative effectiveness study. 2017 ACR/ARHP Annual Meeting. November 2017.
- Knight, A., et al. Underutilization of Social Workers for Mental Health Care of Adolescents in Pediatric Rheumatology - A Mixed Methods Study. 2017 Pediatric Rheumatology Symposium. May 2017.
- Amarilyo, G., et al. Preliminary Consensus Treatment Plans for Periodic Fever, Aphthous Stomatitis, Pharyngitis and Adenitis: The Foundation for Capturing Treatment Responses in PFAPA from the CARRA PFAPA Sub-committee. 2017 Pediatric Rheumatology Symposium. May 2017.
- Morishita, K., et al. Renal Disease Course in Pediatric Anti-Neutrophil Cytoplasmic Antibody Associated Vasculitis in the First 12 Months - a Pediatric Vascilitis Initiative (PedVas) Study. 2017 ACR/ARHP Annual Meeting. November 2017.
- Knight, A., et al. Underutilization of Social Workers for Mental Health Care of Adolescents in Pediatric Rheumatology: A Mixed Methods Study. 2017 Pediatric Rheumatology Symposium. November 2017.
- Ringold, S., et al. Methotrexate use and route of administration in JIA: Results from the Childhood Arthritis & Rheumatology Research Alliance Registry. 2017 ACR/ARHP Annual Meeting. November 2017.
- Henderson, L., et al. 3-D Explant Method Facilitates the Study of Lymphocytes in Synovium and Reveals a Population of Resident Memory-Like T Cells in Rheumatoid Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Chang, M., et al. Murine Model of Arthritis Flare Identifies CD8+ Tissue Resident Memory T Cells in Recurrent Synovitis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Taxter, A., et al. Integration of Electronically Captured Patient-Reported Outcomes in a Pediatric Rheumatology Clinic Visit. 2017 ACR/ARHP Annual Meeting. November 2017.
- Hershin-Bekenstein, M., et al. Peri-pubertal Onset of Systemic Lupus Erythematosus is Associated with Shorter than Expected Adult Height. 2017 ACR/ARHP Annual Meeting. November 2017.
- Consolaro, A., et al. Development of New Juvenile Arthritis Disease Activity Score Cut-Offs for Oligoarthritis and RF-Negative Polyarthritis from a Large Multinational Cohort of Children with Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Shenoi, S., et al. The Disease Burden of Systemic Juvenile Idiopathic Arthritis for Patients and Caregivers: An International Health Related Quality of Life Survey and Retrospective Chart Review. 2017 ACR/ARHP Annual Meeting. November 2017.
- Heshin-Bekenstein M., et al. Childhood-Onset Predicts Increased Steroid-Related Damage Among Adults with Systemic Lupus Erythematosus. 2017 ACR/ARHP Annual Meeting. November 2017.
- Ringold, S., et al. The Childhood Arthritis and Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA Study: Interim Report of Baseline Patient Characteristics and Treatment Choices. 2017 ACR/ARHP Annual Meeting. November 2017.
- Ringold, S., et al. Patterns of Medication Use in Non-Systemic Polyarthritis: Data from the Childhood Arthritis and Rheumatology Research Alliance Patient Registry. 2017 ACR/ARHP Annual Meeting. November 2017.
- Mannion, M., et al. Biologic Switching Among JIA Patients: A Cohort Study in the Childhood Arthritis and Rheumatology Research Alliance Registry. 2017 ACR/ARHP Annual Meeting. November 2017.
- Janow, G., et. al. Cluster Analysis of Autoantibodies and Their Relationship with Demographic and Clinical Features in Pediatric Systemic Lupus Erythematosus in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. 2017 ACR/ARHP Annual Meeting. November 2017.
- Levescot, A., et al. Autoimmune Arthritis in IL-1 Receptor Antagonist-Deficient Mice Is Associated with a Pathogenic Conversion of Foxp3+ Regulatory T Cells into Th17 Cells. 2017 ACR/ARHP Annual Meeting. November 2017.
- Rezaei E., et al. Biologically-Based Approach for Classifying Chronic Childhood Arthritis. 2017 ACR/ARHP Annual Meeting. 2017 ACR/ARHP Annual Meeting. November 2017.
- Stoll, M., et al. Children with Treatment-Naive Enthesitis-Related Arthritis Have Decreased Fecal Abundance of Faecalibacterium Prausnitzii A2-165 and Bacteroides Fragilis: A Multi-Center Collaborative Study. 2017 ACR/ARHP Annual Meeting. November 2017.
- Ardoin, S., et al. Deficiency of Complement C4A or Low Copy Number of Total C4 Genes, HLA-DRB1*15 and HLA-DRB1*03 Are Strong Genetic Risk Factors for Pediatric SLE of European Descent. 2017 ACR/ARHP Annual Meeting. 2017 ACR/ARHP Annual Meeting. November 2017.
- Li, S., et al. Defining Active Features of Juvenile Localized Scleroderma. 2017 ACR/ARHP Annual Meeting. 2017 ACR/ARHP Annual Meeting. November 2017.
- Li, S., et al. Extracutaneous Involvement is Commone in Juvenile Localized Scleroderma and Associated with a Higher Level of Perceived Disease Impact. 2017 ACR/ARHP Annual Meeting. November 2017.
- Chhabra, A., et al. Effectiveness of Common Treatment Strategies for Juvenile Arthritis in Usual Practice: Results from the Research in Arthritis in Canadian Children Emphasizing Outcomes Cohort. 2017 ACR/ARHP Annual Meeting. November 2017.
- Mallalieu, N., et al. Evaluation of a Dosing Regimen for Tocilizumab in Patients Younger Than Two Years of Age with Systemic Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Westra, H-J., et al. Fine-Mapping Identifies Causal Variants for RA and T1D in DNASE1L3, Sirpg, MEG3, TNFAIP3 and CD28/CTLA4 Loc. 2017 ACR/ARHP Annual Meeting. November 2017.
- Horton, D., et al. How Young People with Juvenile Idiopathic Arthritis and Their Caregivers Weigh the Risks of the Disease and its Treatment: A Mixed-Methods Study. 2017 ACR/ARHP Annual Meeting. November 2017.
- Guzman, J., et al. Individualized Prediction of Early Remission on Medication in Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Rose-Davis, B., et al. Knowledge Translation in Juvenile Idiopathic Arthritis Research in Canada: A Focus on Pediatric Rheumatologists and Allied Health Professionals. 2017 ACR/ARHP Annual Meeting. November 2017.
- Grieshaber Bouyer, R., et al. Multiplexed Characterization of Circulating and Joint-Derived Human Neutrophils in Inflammatory Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Grevich, S., et al. Oral Microbial Profile in Juvenile Idiopathic Arthritis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Amarilyo, G., et al. Preliminary Consensus Treatment Plans for Periodic Fever, Aphthous Stomatitis, Pharyngitis and Adenitis: The Foundation for Capturing Treatment Responses in PFAPA from the CARRA PFAPA Subcommittee. 2017 ACR/ARHP Annual Meeting. November 2017.
- Deakin, C., et al. The Interaction between Genetic Risk Factors and Age of Disease Onset in Juvenile Dermatomyositis. 2017 ACR/ARHP Annual Meeting. November 2017.
- Horton, D., et al. Factors Related to Sustained Discontinuation of Medications for Well-Controlled JIA in the Childhood Arthritis & Rheumatology Research Alliance Registry. 2017 ACR/ARHP Annual Meeting. November 2017.
- Lovell, D., et al. Validation of Biomarkers to Predict Flare in Polyarticular JIA upon Stopping Anti-TNF Therapy. 2017 ACR/ARHP Annual Meeting. November 2017.
- Jonsson, A., et al. δ1, Vδ2, and Other γδT Cells in Blood and Synovium of Rheumatoid Arthritis and Other Autoimmune Arthritides. 2017 ACR/ARHP Annual Meeting. November 2017.
- Orandi, A., et al. Clinical Features and Frequency of Biologic use in Patients with Juvenile Dermatomyositis-associated Calcinosis. 2017 Pediatric Rheumatology Symposium. May 2017.
- Kim, H., et al. Novel Serum Broad-Based Proteomic Discovery Analysis Identifies Proteins and Pathways Dysregulated in Juvenile Dermatomyositis (JDM) Myositis Autoantibody Groups. 2017 Pediatric Rheumatology Symposium. May 2017.
- Ringold, S., et al. Baseline characteristics of the first 123 patients enrolled in the Childhood Arthritis & Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA Comparative Effectiveness Study. 2017 Pediatric Rheumatology Symposium. May 2017.
- Henderson, L., et al. The Lymphocyte Repertoire in Juvenile Dermatomyositis. 2017 Pediatric Rheumatology Symposium. 2017 Pediatric Rheumatology Symposium. May 2017.
- Woolnough, L., et al. Novel Approach to Quantifying Joint Pathology Via Musculoskeletal Ultrasound in Newly Diagnosed Juvenile Idiopathic Arthritis. 2017 Pediatric Rheumatology Symposium. May 2017.
Periodicals
Articles
- Moorthy, L.N., et al. Efficacy of an Interinstitutional Mentoring Program Within Pediatric Rheumatology. Arthritis Care & Research.
- Morgan, E. Improving care delivery and outcomes in pediatric rheumatic diseases. Current Opinion in Rheumatology.
- Janow, G., et al. The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis & Rheumatology Research Alliance Registry. J Rheumatology. 2010-2013
- Knight, A.M., et al. Identifying Targets for Improving Mental Healthcare of Adolescents with Systemic Lupus Erythematosus: Perspectives from Pediatric Rheumatology Clinicians in the United States and Canada. J Rheumatology. 2016
- Fitzpatrick, L., et al. Phenotypic Characterization of Juvenile Idiopathic Arthritis in African American Children. J Rheumatology. 2016
- Driest, K.D., et al. Factors associated with thrombosis in pediatric patients with systemic lupus erythematosus. Lupus. 2016
- Prahalad, S., et al. Familial autoimmunity in the Childhood Arthritis and Rheumatology Research Alliance registry.. Pediatric Rheumatology. 2016
- Henderson, L.A., et al. Medication use in juvenile uveitis patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry. Pediatric Rheumatology. 2016
- Wenderfer, S.E., et al. Practice patterns and approach to kidney biopsy in lupus: a collaboration of the Midwest Pediatric Nephrology Consortium and the Childhood Arthritis and Rheumatology Research Alliance. Pediatric Rheumatology. 2016
- Nowell, W.B., et al. Reenergizing Research While Improving Patient Care. Provider Magazine. 2016 June
- Huber, A.M., et al. Childhood Arthritis and Rheumatology Research Alliance Consensus Clinical Treatment Plans for Juvenile Dermatomyositis with Persistent Skin Rash. The Journal of Rheumatology. 2016 November
- Kimura, Y. and Schanberg, L.E. The Future of Pediatric Rheumatology Grounded in Evolution of Childhood Arthritis and Rheumatology Research Alliance. The Journal of Rheumatology. 2016 Dececmber 15
- Fotis, L., et al. Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting, Toronto, Canada. Pediatric Rheumatology. 2016 April 14-17
Abstracts
- Ringold, S., et al. Patterns of Medication Use in Children with Juvenile Idiopathic Arthritis: Results from the Childhood Arthritis & Rheumatology Research Alliance Registry. 2016 ACR/ARHP Annual Meeting. September 2016.
- Blier, P.R., et al. Comparative performance of small and large clinical centers in a comprehensive pediatric rheumatology disease registry. CARRA Annual Meeting 2016. 2016.
- Moncrieffe, H., et al. Transcriptional profiling reveals monocyte signature associated with JIA patient poor response to methotrexate. CARRA Annual Meeting 2016. 2016.
- Stevens, B., et al. Juvenile Systemic Sclerosis Cohort within The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry: Baseline and Follow Up Characteristics. EULAR 2016. Ann Rheum Dis2016;75(Suppl2): 761. 2016 .
- Knight, A., et al. Mental Health Care for Adolescents with Rheumatologic Conditions: Perspectives from Pediatric Behavioral Health Providers in North America. 2016 ACR/ARHP Annual Meeting. September 2016.
- Rubinstein, T., et al. Predictors of Delays to Care and Associated Outcomes in Pediatric Lupus Patients from the Childhood Arthritis and Rheumatology Research Alliance Registry. 2016 ACR/ARHP Annual Meeting. September 2016.
- Orandi, A.B., et al. Assessment, classification and treatment of calcinosis as a complication of juvenile dermatomyositis: A survey of pediatric rheumatologists by the Childhood Arthritis and Rheumatology Research Alliance. CARRA Annual Meeting 2016. 2016.
- Li, S.C., et al. Evaluating the feasibility of conducting comparative effectiveness studies in juvenile Localized Scleroderma (jLS). CARRA Annual Meeting 2016. 2016.
- Stevens, B., et al. Juvenile systemic sclerosis cohort within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry: Follow up characteristics. CARRA Annual Meeting 2016. 2016.
- Kimura, Y., et al. Results of the pilot study of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus treatment plans for new-onset systemic juvenile idiopathic arthritis. CARRA Annual Meeting 2016. 2016.
- Stinson, J., et al. iCanCope: User-centred design and development of a smartphone app to support self-management for youth with arthritis pain. CARRA Annual Meeting 2016. 2016.
- Gilbert, M., et al. Comparison of pediatric rheumatology and nephrology survey results for the treatment of refractory proliferative lupus nephritis and renal flare in juvenile SLE. CARRA Annual Meeting 2016. 2016.
- Arkin, L., et al. Practice-Based Differences Between Pediatric Rheumatologists and Dermatologists Caring for Children with Discoid Lupus. 2016 ACR/ARHP Annual Meeting. September 2016.
- Cooper, J.C., et al. A Pilot Study of Consensus Treatment Plans for Induction Therapy in Childhood Proliferative Lupus Nephritis. 2016 ACR/ARHP Annual Meeting. September 2016.
- Crowson, C.S., et al. Predictors of Changes in Disease Activity Among Children with Juvenile Dermatomyositis. 2016 ACR/ARHP Annual Meeting. September 2016.
- Tory, H., et al. Comparison of Patient and Physician Reported Global Disease Activity Measures in Juvenile Dermatomyositis. 2016 ACR/ARHP Annual Meeting. September 2016.
- Hayward, K., et al. Mentoring the Pediatric Rheumatology Community through the American College of Rheumatology/Childhood Arthritis and Rheumatology Research Alliance Mentoring Interest Group Network: A Five-Year Status Update. 2016 ACR/ARHP Annual Meeting. September 2016.
- Beukelman, T., et al. Clinical characteristics of the initial patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. CARRA Annual Meeting 2016. 2016.
- Boneparth, A., et al. Clinical characteristics of children with membranous lupus nephritis: The Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. CARRA Annual Meeting 2016. 2016.
- Janow, G., et al. The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis & Rheumatology Research Alliance Registry. CARRA Annual Meeting 2016. 2016.
- Oberle, E.J., et al. Clinical course of juvenile dermatomyositis presenting as skin predominant disease. CARRA Annual Meeting 2016. 2016.
- Oberle, E.J., et al. A Survey of musculoskeletal ultrasound practices of pediatric rheumatologists in North America. CARRA Annual Meeting 2016. 2016.
- Reed, A., et al. CARRA dermatomyositis CTP pilot study. CARRA Annual Meeting 2016. 2016.
- Stinson, J., et al. Development and usability testing of an iPad and desktop psycho-educational game for children with Juvenile Idiopathic Arthritis and their parents. CARRA Annual Meeting 2016. 2016.
- Wenderfer, S.E., et al. Proliferative lupus nephritis in juvenile SLE: Support from the pediatric nephrology community for the definitions of responsiveness and flare in the 2012 consensus treatment plans. CARRA Annual Meeting 2016. 2016.
- Woo, J.M.P., et al. The steroid taper app: Making of a mobile app. CARRA Annual Meeting 2016. 2016.
July 15, 2016
Editor’s note: The previous edition of the CARRA newsletter incorrectly identified the authors of the publication The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis and Rheumatology Research Alliance Registry: 2010–2013. The corrected authors listing is as follows: CARRA members Ginger Janow, Laura Schanberg, Betsy Mellins, Yuki Kimura, and Rayfel Schneider, along with Soko Setoguchi and Vic Hasselblad.
First author Ginger Janow, MD, commented, “An important take-away from the paper is that our systemic JIA patients are doing well overall with low morbidity. However, pockets of more severe disease appear to exist, particularly amongst African American patients and those whose arthritis persists even though their systemic symptoms have resolved.”
The authors conclude that future research will need to assess these groups more closely. Practice patterns in the choice of biologic agents appeared to change during the study period. There appeared to be a shift away from TNF-alpha inhibitor use and an increase in the use of IL-1 and IL-6 inhibitors. The new CARRA Registry is collecting more detailed information such as medication doses (specifically steroids) and start/stop dates to further define trends in treatment and outcomes.
June 3, 2016
White, P. H., & Ardoin, S. (2015). Transitioning Wisely: Improving the connection from pediatric to adult health care. Arthritis & Rheumatology.
About the authors: Stacy Ardoin, MD, is Interim Chief of Rheumatology at Nationwide Children’s Hospital and a member of the CARRA Steering Committee. Dr. Ardoin is board-certified in both adult and pediatric rheumatology. She sees pediatric patients at Nationwide Children’s Hospital and adult patients in the Ohio State University Rheumatology Clinic and in the Ohio State University Lupus Clinic, where she provides care to patients with lupus, vasculitis, rheumatoid arthritis, scleroderma, myositis and other rheumatologic conditions. Patience White, MD, a CARRA member, is an adult and pediatric rheumatologist in Washington, DC, who for over 20 years has been involved in transition issues for children with disabilities.
Overview: Young people with rheumatic and other chronic diseases often face a challenging transition from pediatric to adult health care. White and Ardoin’s paper examines recent literature about the transition to adult care for youth with rheumatic conditions. The authors focus on the resources needed for providers to help smooth the transition process in pediatric and adult primary and specialty care settings.
Data show that many families are unprepared for the challenges associated with the transition. Families have reported that they often experience a lack of support and guidance. Providers also report a lack of satisfaction with available transitional resources and are interested in finding effective ways to support their young adult patients through this transition. Without support, young adults may suffer from lower care quality or increased health care costs. Factors involved in the lack of support include individual patient factors, such as limited self-management and self-advocacy skills or lack of family support, and system factors related to insurance coverage, communication gaps between health providers and health systems, and lack of provider education about transition and access to care.
The paper recommends transition tools for both pediatric and adult rheumatologists. The authors suggest that better transition preparation, health care transfer, and integration into adult health care is possible.
Articles
Abstracts
- A Comparison of Pain and Disability, and Their Association Between Juvenile Primary Fibromyalgia Syndrome and Pediatric Rheumatic Diseases: Results from the Childhood Arthritis and Rheumatology Research Alliance Registry. Weiss JE, Connelly M.. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Damage Develops Early and Is Common in Children with Chronic Systemic Vasculitis. O’Neill L, Twilt M, Benseler S, Föll D, Cabral DA, Luqmani R. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Description of the Juvenile Localized Scleroderma Subgroup of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Wu EY, Li SC, Torok KS, Virkud Y, Fuhlbrigge RC, Rabinovich CE. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Development of an Internationally Agreed Minimal Dataset for Juvenile Dermatomyositis (JDM) for Clinical and Research Use. McCann LJ, Wedderburn LR, Pilkington C, Huber AM, Ravelli A, Kirkham J, Williamson P, Beresford MW. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Gene Expression Profiles from Disease Discordant Twins Suggest Shared Antiviral Pathways and Viral Exposures among Multiple Systemic Autoimmune Diseases. Gan L, O’Hanlon TP, Lai Z, Fannin R, Weller ML, Rider LG, et al.. PLoS ONE. 2015; 10(11): e0142486. doi:10.1371/journal. pone.0142486.
- Improvement in Mentoring Associated with Implementation of an Inter-Institutional Mentoring Program within Pediatric Rheumatology. Moorthy LN, Muscal E, Riebschleger M, Klein-Gitelman MS, Nigrovic LE, Rouster-Stevens KA, Ferguson PJ, Eberhard BA, Brunner HI, Prahalad S, Schneider R, Nigrovic PA. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Initial Results of a Pilot Juvenile Localized Scleroderma (jLS) Comparative Effectiveness Study. Li SC, Torok KS, Hong SD, Ferguson PJ, Rabinovich CE, Becker ML, Dedeoglu F, Ibarra MF, Fuhlbrigge RC, Stewart KG, Punaro MG, Mason T II, Pope E, Laxer R, Higgins GC, Feldman B. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Pediatric Rheumatologists’ Perceptions of Career Satisfaction, Confidence in Fulfilling Their Roles, and Burn-out. Moorthy LN, Schneider R, Riebschleger M, Muscal E, Klein-Gitelman MS, Eberhard BA, Ferguson PJ, Rouster-Stevens KA, Brunner HI, Prahalad S, Nigrovic PA. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Racial Comparisons of Children with Idiopathic Uveitis: Results from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Angeles-Han ST, Travers C, Lo MS, Rabinovich CE, Prahalad S. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Results from the Childhood Arthritis and Rheumatology Research Alliance Systemic JIA Consensus Treatment Plans Pilot Study. Kimura Y, Beukelman T, Morgan-DeWitt E, Mieszkalski KL, Graham TB, Ibarra MF, Ilowite N, Klein-Gitelman MS, Onel K, Prahalad S, Punaro MG, Ringold S, Toib D, Van Mater H, Weiss PF, Schanberg L. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Current Provider Practices and Perceived Barriers for Mental Health Care of Adolescents with SLE. Knight A, Vickery M, Muscal E, Davis A, Harris J, Soybilgic A, Onel K, Schanberg LE, Rubinstein T, Gottlieb BS, Wright T, von Scheven E. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Characteristics of the Juvenile Systemic Sclerosis Cohort within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Stevens BE, Torok KS, Li SC, Hershey N, Curran M, Higgins GC, Moore K, Rabinovich CE, Stevens AM. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Inter-Provider Reliability in Scoring the Physician Global Assessment of Disease Activity Among Patients with Juvenile Idiopathic Arthritis Patients Who Met the ACR Provisional Criteria for Clinical Inactive Disease. Taylor J, Giannini EH, Lovell D, Morgan DeWitt EM. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Inflammatory Bowel Disease in Children with Systemic Juvenile Idiopathic Arthritis. Fox E, Hsu J, Chalom E, Sertial S, Park K, Simard JF, Quartier P, Terreri MT, Baszis K, Borocco C, Prahalad S, Reinhardt A, Schonenberg D, Mellins ED, Zisman D. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Gender Differences in Pediatric Localized Scleroderma: Clinical and Patient-Reported Outcomes. Ardalan K, Hershey N, Yabes J, Wu E, Li SC, Fuhlbrigge RC, Rabinovich CE, Torok KS. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Enteric Flora in Newly Diagnosed Spondyloarthritis: A Collaborative Study. Stoll ML, Weiss PF, Weiss JE, Nigrovic PA, Punaro MG, Spencer CH, Schikler KN, Morrow CD, Lefkowitz EJ. Arthritis Rheumatol. 2015; 67 (suppl 10).
- A Description of the Transition Aged Population in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Hersh AO, Son MB, von Scheven E.. Arthritis Rheumatol. 2015; 67 (suppl 10). 2015.
- Adiposity in Children with Juvenile Psoriatic Arthritis (JPsA). Samad A, Stoll ML, Lavi I, Gupta K, Hsu J, Strand V, Mellins ED, Zisman D.. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Associations Between Race and Income Disparity on Morbidity in Juvenile Dermatomyositis. Phillippi K, Hoeltzel M, Robinson AB, Kim S. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Relationship of Race, Ethnicity, and Outcomes in Pediatric Localized Scleroderma: Possible Differences in Disease Activity. Ardalan K, Hershey N, Yabes J, Torok KS. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Physicians’ Perspectives on the Diagnosis and Treatment of Chronic Nonbacterial Osteomyelitis. Zhao Y, Dedeoglu F, Ferguson PJ, Lapidus S, Laxer R, Li SC. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Treatment and Outcomes in Pediatric SLE Patients in South Africa. Lewandowski L, Scott C, Schanberg L, Thielman N. Arthritis Rheumatol. 2015; 67 (suppl 10).
- Views and Prescribing Habits of Pneumocystis Prophylaxis in the Pediatric Rheumatology Community. Basiaga M, Ogdie-Beatty A. Arthritis Rheumatol. 2015; 67 (suppl 10).
Articles
- Adding canakinumab to the Childhood Arthritis and Rheumatology Research Alliance consensus treatment plans for systemic juvenile idiopathic arthritis. DeWitt et al.. Arthritis Care Res (Hoboken) 2014 Sep;66(9):1430-1
- Randomized, double-blind, placebo-controlled trial of the efficacy and safety of rilonacept in the treatment of systemic juvenile idiopathic arthritis. Ilowite NT, Prather K, Lokhnygina Y, Schanberg LE, Elder M, Milojevic D, Verbsky JW, Spalding SJ, Kimura Y, Imundo LF, Punaro MG, Sherry DD, Tarvin SE, Zemel LS, Birmingham JD, Gottlieb BS, Miller ML, O’Neil K, Ruth NM, Wallace CA, Singer NG, Sandborg CI. Arthritis Rheumatol 2014 Sep;66(9):2570-9
- Development and retrospective validation of the juvenile spondyloarthritis disease activity (JSpADA) index. Weiss PF, Colbert RA, Xiao R, Feudtner C, Beukelman T, Morgan DeWitt E, Pagnini I, Wright TB, Wallace CA. Arthritis Care Res (Hoboken) 2014 Jul 21
- Juvenile Idiopathic Arthritis Disease-Specific Research Committee of the Childhood Arthritis and Rheumatology Research Alliance. Kimura Y, DeWitt EM, Beukelman T, Stoll ML, Nigrovic PA, Onel K, Prahalad S, Angeles-Han S, Schneider R. 2014
- AMIGO: a novel approach to the mentorship gap in pediatric rheumatology. Nigrovic PA, Muscal E, Riebschleger M, Moorthy LN, Brunner HI, Eberhard BA, Klein-Gitelman M, Prahalad S, Schneider R.. J Pediatr 2014 Feb;164(2):226-7
- Childhood Arthritis and Rheumatology Research Alliance consensus treatment plans for new-onset polyarticular juvenile idiopathic arthritis. Ringold S, Weiss PF, Colbert RA, DeWitt EM, Lee T, Onel K, Prahalad S, Schneider R, Shenoi S, Vehe RK, Kimura Y. Arthritis Care Res (Hoboken) 2014 Jul;66(7):1063-72
- Clinical characteristics of children with juvenile dermatomyositis: the childhood arthritis and rheumatology research alliance registry. . Arthritis Care Res (Hoboken) 2014 Mar; 66(3):404-10. doi: 10.1002/acr.22142. PMID:23983017
- Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators. Robinson AB, Hoeltzel MF, Wahezi DM, Becker ML, Kessler EA, Schmeling H, Carrasco R, Huber AM, Feldman BM, Reed AM. 2014
- Clinical features, treatment and outcome of macrophage activation syndrome complicating systemic juvenile idiopathic arthritis A multinational, multicenter study of 362 patients. Arthritis Rheumatol. Minoia F, Davì S, Horne A, Demirkaya E, Bovis F, Li C, Lehmberg K, Weitzman S, Insalaco A, Wouters C, Shenoi S, Espada G, Ozen S, Anton J, Khubchandani R, Russo R, Pal P, Kasapcopur O, Miettunen P, Maritsi D, Merino R, Shakoory B, Alessio M, Chasnyk V, Sanner H, Gao Y, Huasong Z, Kitoh T, Avcin T, Fischbach M, Frosch M, Grom A, Huber A, Jelusic M, Sawhney S, Uziel Y, Ruperto N, Martini A, Cron RQ, Ravelli A; on behalf of the Pediatric Rheumatology International Trials Organization; the Childhood Arthritis & Rheumatology Research Alliance; the Pediatric Rheumatology Collaborative Study Group, and the Histiocyte Society. Arthritis Rheumatol 2014 Jul 30
- Clinically inactive disease in a cohort of children with new-onset polyarticular juvenile idiopathic arthritis treated with early aggressive therapy: time to achievement, total duration, and predictors. Wallace CA, Giannini EH, Spalding SJ, Hashkes PJ, O’Neil KM, Zeft AS, Szer IS, Ringold S, Brunner HI, Schanberg LE, Sundel RP, Milojevic DS, Punaro MG, Chira P, Gottlieb BS, Higgins GC, Ilowite NT, Kimura Y, Johnson A, Huang B, Lovell DJ; Childhood Arthritis and Rheumatology Research Alliance (CARRA). J Rheumatol 2014 Jun;41(6):1163-70. doi: 10.3899/jrheum.131503. Epub 2014 May 1
- Comparison of renal response parameters for juvenile membranous plus proliferative lupus nephritis versus isolated proliferative lupus nephritis: a cross-sectional analysis of the CARRA Registry. Boneparth A, Ilowite N; for the CARRA Registry Investigators.. Lupus 2014 Apr 11;23(9):898-904
- Performance of current guidelines for diagnosis of macrophage activation syndrome complicating systemic juvenile idiopathic arthritis. Davì S, Minoia F, Pistorio A, Horne A, Consolaro A, Rosina S, Bovis F, Cimaz R, Gamir ML, Ilowite NT, Kone-Paut I, Feitosa de Oliveira SK, McCurdy D, Silva CA, Sztajnbok F, Tsitsami E, Unsal E, Weiss JE, Wulffraat N, Abinun M, Aggarwal A, Apaz MT, Astigarraga I, Corona F, Cuttica R, D’Angelo G, Eisenstein EM, Hashad S, Lepore L, Mulaosmanovic V, Nielsen S, Prahalad S, Rigante D, Stanevicha V, Sterba G, Susic G, Takei S, Trauzeddel R, Zletni M, Ruperto N, Martini A, Cron RQ, Ravelli A; Paediatric Rheumatology International Trials Organisation, the Childhood Arthritis and Rheumatology Research Alliance, the Pediatric Rheumatology Collaborative Study Group, and the Histiocyte Society. Arthritis Rheumatol 2014 Oct;66(10):2871-80
- Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. Chira P, Ronis T, Ardoin S, White P. J Rheumatol 2014 Apr;41(4):768-79. doi: 10.3899/jrheum.130615. Epub 2014 Mar 1
Abstracts
- A Pilot Study to Evaluate the Feasibility of Conducting Juvenile Localized Scleroderma Comparative Effectiveness Treatment Studies. Suzanne C. Li, Kathryn S. Torok, Mara L Becker Fatma Dedeoglu, Polly J. Ferguson, Robert C. Fuhlbrigge Gloria C. Higgins, Sandy D. Hong, Maria F. Ibarra, Ronald Laxer, Thomas G. Mason II, Elena Pope, Marilynn G. Punaro, C. Egla Rabinovich, Katie G. Stewart and Brian Feldman, Pediatrics, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, Rheumatology, Children’s Mercy Hospital, Kansas City, MO, Clinical Pharmacology and Rheumatology, Children’s Mercy Hospital, Kansas City, MO, Rheumatology, Boston Children’s Hospital, Boston, MA, Dept of Pediatrics–Rheum, University of Iowa Carver College of Medicine, Iowa City, IA, Department of Dermatology, Brigham and Women’s Hospital, Boston, MA, Division of Immunology, Boston Children’s Hospital, Boston, MA, Pediatric Rheumatology Ohio State University, Nationwide Childrens Hosp, Columbus, OH, Pediatrics-Rheumatology, U of Iowa Children’s Hosp, Iowa City, IA, Pediatric Rheumatolgy, Children’s Mercy Hospital, Kansas City, MO, Rheumatology, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada, Rheumatology, Mayo Clinic Rochester, Rochester, MN, Dermatology, The Hospital for Sick Children, Toronto, ON, Canada, Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, Pediatric Rheumatology, Duke Univ Med Ctr, Durham, NC, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada.
- Towards Reliable Implementation and Optimal Use of Medication Decision Aid Cards for Shared Decision Making in Juvenile Idiopathic Arthritis. Esi M. Morgan DeWitt, Janalee Taylor, Karla B. Jones, Murray H. Passo, Catherine C. Mims, Jesse Pratt, Ellen A. Lipstein, Nancy Griffin, Sheetal S. Vora, Beth S. Gottlieb, Elizabeth Roth-Wojcicki and William B. Brinkman, Department of Pediatrics, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, William S. Rowe Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Rheumatology ED S, Nationwide Children’s Hospital, Columbus, OH,Pediatric Rheumatology, Medical University of South Carolina, Charleston, SC,Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Division of Adolescent Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, University of North Carolina Chapel Hill, Chapel Hill, NC,Pediatric Rheumatology, Cohen Children’s Medical Center of New York, New Hyde Park, NY, Pediatrics, Medical College of Wisconsin, Milwaukee, WI, Division of General and Community Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. 2014
- Symptom and Treatment Characteristics of Juvenile Primary Fibromyalgia Syndrome: Are Males and Females Created Equal. Jennifer E. Weiss, Kenneth Schikler, Alexis Boneparth, Cara Hoffart and Mark Connelly. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium March 2014 Volume 66, Issue Supplement S3, page S134
- Process Outcomes and Community-Wide Efficacy of the Amigo Inter-Institutional Mentoring Initiative within Pediatric Rheumatology. Lakshmi N. Moorthy, Eyal Muscal, Meredith P. Riebschleger, Kelly A. Rouster-Stevens, Polly J. Ferguson, Rayfel Schneider, Marisa Klein-Gitelman, Hermine I. Brunner, Anna Huttenlocher and Peter A. Nigrovic, Pediatric Rheumatology, Robert Wood Johnson Medical School-Rutgers University, New Brunswick, NJ, Rheumatology, Texas Children’s Hospital, Houston, TX, Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI, Pediatrics, Emory University School of Medicine, Atlanta, GA, Dept of Pediatrics–Rheum, University of Iowa Carver College of Medicine, Iowa City, IA, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, Anne & Robert H Lurie Childrens Hospital of Chicago, Chicago, IL, PRCSG, Cincinnati, OH, Dept of Pediatrics and MMI, Univ of Wisconsin Schl of Med, Madison, WI,Brigham and Women’s Hospital/Harvard University, Cambridge, MA.. 2014
- Oral Presentation: Regulatory Variants of the MHC, and a Regulatory Region Near an Intergenic Long Noncoding RNA on Chromosome 1 Are Risk Factors for Systemic Juvenile Idiopathic Arthritis. Michael J. Ombrello, Elaine F. Remmers, Ioanna Tachmazidou, Alexei Grom, Dirk Föll, Alberto Martini, Marco Gattorno, Seza Ozen, Sampath Prahalad Andrew S. Zeft, John F. Bohnsack, Norman T. Ilowite, Jane L. Park, Elizabeth D. Mellins, Ricardo A. G. Russo, Claudio A. Len, Sheila K. Feitosa de Oliveira, Rae SM Yeung, Lucy R. Wedderburn Jordi Anton, Tobias Schwarz, Buhm Han, Richard H. Duerr, Jean-Paul Achkar, M. Ilyas Kamboh, Kenneth M. Kaufman, Leah C. Kottyan, Dalila Pinto, Stephen Scherer, Marta E. Alarcón-Riquelme, Elisa Docampo Martinez, Xavier Estivill, Ahmet Gul, Colleen Satorius, Paul I.W. de Bakker , Soumya Raychaudhuri , Carl D. Langefeld, Susan D. Thompson, Eleftheria Zeggini, Wendy Thomson, Daniel L. Kastner, Patricia Woo and International Childhood Arthritis Genetics (INCHARGE) Consortium, Translational Genetics and Genomics Unit, National Institute of Arthritis Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Inflammatory Disease Section, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, The Wellcome Trust Sanger Institute, Cambridge, United Kingdom, Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric Rheumatology and Immunology, University Children’s Hospital Muenster, Muenster, Germany, University of Genova, Genova, Italy, Pediatric Rheumatology, Instituto Giannina Gaslini, Genoa, Italy, Deptartment. of Pediatric Rheumatology, Hacettepe University, Ankara, Turkey, Emory University School of Medicine, Atlanta, GA, Children’s Healthcare of Atlanta, Atlanta, GA, Pediatrics Rheumatology, Cleveland Clinic, Cleveland, OH, Pediatriacs, University of Utah, Salt Lake City, UT, Pediatrics, Albert Einstein College of Medicine, Bronx, NY, Pediatric Rheumatology, Stanford University Medical Center, Stanford, CA, Dept of Pediatrics CCSR, Stanford University Medical Center, Stanford, CA, Immunology & Rheumatology, Hospital de Pediatria Garrahan, Buenos Aires, Argentina, Universidade Federal de São Paulo/Escola Paulista de Medicina, São Paulo, Brazil, Pediatric Rheumatology, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, University College London (UCL) Institute of Child Health, London, United Kingdom, Great Ormond Street Hospital, London, United Kingdom, Pediatric Rheumatology Unit. Hospital Sant Joan de Déu. Universitat de Barcelona, Barcelona, Spain, Pediatric rheumathology and osteology, University of Wuerzburg, Wuerzburg, Germany, Program in Medical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, Department of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh, Pittsburgh, PA, Gastroenterology and Hepatology, Cleveland Clinic, Cleveland, OH, Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA, Center for Autoimmune Genomics and Etiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Genetics and Genomi Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, The Centre for Applied Genomics, The Hospital for Sick Children, Toronto, ON, Canada, Arthritis and Clinical Immunology Program, Oklahoma Medical Research Foundation, Oklahoma City, OK, Unit of Animal Genomics, GIGA-Université de Liège, LIege, Belgium, Genetic Causes of Disease Laboratory, Center for Genomic Regulation, Barcelona, Spain, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey, National Human Genome Research Institute, Bethesda, MD, Brighan and Women’s Hospital, Harvard Medical School, Boston, MA, Broad Institute of MIT and Harvard, Cambridge, MA, University Medical Center Utrecht, Utrecht, Netherlands, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, Manchester Academic Health Sciences Centre, Manchester, United Kingdom, Center for Public Health Genomics and Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, Division and Center for Autoimmune Disease Genomics and Etiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Inflammatory Disease Section, National Human Genome Research Institute, Bethesda, MD, Paediatric Rheumatology Unit, University College London, London, United Kingdom. 2014
- Analysis of Risk Factors for Thrombosis in Pediatric Patients with Systemic Lupus Erythematosus. Kyla D. Driest, Mollie S. Sturm, Sarah H. O’Brien, Charles H. Spencer and Stacy P. Ardoin, Rheumatology, OSU Pediatrics, Nationwide Children’s Hospital, Columbus, OH,Nationwide Children’s Hospital, Columbus, OH, Hematology, Nationwide Children’s Hospital, Columbus, OH, Rheumatology, Nationwide Childrens Hospital, Columbus, OH,Pediatric & Adult Rheumatology, Ohio State University College of Medicine, Columbus, OH.
- Changes over time in symptoms and treatment of juvenile primary fibromyalgia syndrome. Mark Connelly, Cara Hoffart, Kenneth Schikler, Alexis Boneparth andJennifer E. Weiss. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium 2014 Volume 66, Issue Supplement S3, page S117
- Comorbidity Patterns in Children with Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus: The Childhood Arthritis and Rheumatology Research Alliance Registry. Marc D. Natter, Mei-Sing Ong, Kenneth D. Mandl, Laura Schanberg, Yukiko Kimura, Norman Ilowite and the CARRA Registry Investigators, Intelligent Health Labs, Children’s Hospital Boston, Boston, MA, Australian Institute of Health Innovation, University of New South Wales, Sydney, Australia, Intelligent Health Lab, Children’s Hospital Boston, Boston, MA, Duke University, Durham, NC, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Rheumatology, Children’s Hospital Montefiore, Bronx, NY. 2014
- Demographic, Clinical and Treatment Characteristics of the Childhood Arthritis and Rheumatology Research Alliance Registry Systemic JIA Cohort. Ginger L. Janow, Laura Schanberg, Soko Setoguchi, Elizabeth D. Mellins, Rayfel Schneider, Yukiko Kimura, and The CARRA Registry Investigators, Pediatric Rheumatology, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Duke University, Durham, NC, Duke Clinical Research Institute, Durham, NC, Dept of Pediatrics CCSR, Stanford University Medical Center, Stanford, CA,Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Childhood Arthritis and Rheumatology Research Alliance, Durham, NC. 2014
- Familial Autoimmunity in the CARRA Registry. Sampath Prahalad, Courtney McCracken, Lori Ponder, Sheila T. Angeles-Han, Kelly Rouster Stevens, Larry B. Vogler, Carl D. Langefeld, Susan D. Thompson, and The CARRA Registry Investigators. Arthritis and Rheumatology 2014 Vol. 66, No. S3, March, p S157
- Increasing Rates of Remission in Juvenile Idiopathic Arthritis through a Quality Improvement Learning Network – the Pediatric Rheumatology Care and Outcomes Improvement Network. Esi M. Morgan DeWitt, Stacy P. Ardoin, C. April Bingham, Beth S. Gottlieb, Ronald Laxer, Nancy Griffin, Jesse Pratt, Anne Paul, Daniel Lovell, Judyann C. Olson, Murray H. Passo, Jennifer E. Weiss, Tzielan C. Lee, Sheetal S. Vora, Melissa M. Hazen and Peter Margolis, Department of Pediatrics, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric & Adult Rheumatology, Ohio State University College of Medicine, Columbus, OH, Penn State Hershey Children’s Hospital, Hershey, PA, Pediatric Rheumatology, Cohen Children’s Medical Center of New York, New Hyde Park, NY, Rheumatology, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada, James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH,Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH,Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati, Cincinnati, OH, Medical College of Wisconsin, Milwaukee, WI, Pediatric Rheumatology, Medical University of South Carolina, Charleston, SC, Pediatric Rheumatology, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Stanford University School of Medicine, Stanford, CA, University of North Carolina Chapel Hill, Chapel Hill, NC, Division of Immunology, Boston Children’s Hospital, Boston, MA, Clinical Effectiveness, Cincinnati Children’s Hospital, Cincinnati, OH. 2014
- Insufficient CARRA Registry Data Available to Adequately Evaluate for Associations Between Juvenile Idiopathic Arthritis, Antibody Status, and Smoke Exposure. Nora G. Singer, Steven Lewis, Douglas Gunzler, Stephanie Kanuch andAndrew S. Zeft. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium March 2014 Volume 66, Issue Supplement S3, page S145
- Medication use in the treatment of juvenile idiopathic uveitis patients enrolled in the childhood arthritis and rheumatology research alliance registry. Lauren A. Henderson, David Zurakowski, Sheila Angeles-Han, Andrew Lasky, C. Egla Rabinovich andMindy S. Lo. Arthritis & Rheumatology. American College of Rheumatology March 2014 Vol. 66, No. S3, p S102DOI 10.1002/art.38486©
- Preliminary Results from the Childhood Arthritis and Rheumatology Research Alliance Systemic JIA Consensus Treatment Plans Pilot Study. Y Kimura, EM DeWitt, K Mieszkalski, T Beukelman, TB Graham, M Ibarra, N Ilowite, M Klein-Gitelman, K Onel,S Prahalad, M Punaro, S Ringold, D Toib, H Van Mater, P Weiss, LE Schanberg for the CARRA Registry Investigators. 2014
- Studying Patients with Autoinflammatory Diseases: The Past, Present, and a Perspective for the Future. Jonathan S. Hausmann, Catherine Biggs, Donald P. Goldsmith and Fatma Dedeoglu, Rheumatology, Boston Children’s Hospital, Boston, MA, Rheumatology, Beth Israel Deaconess Medical Center, Boston, MA, Program in Rheumatology, Divison of Immunoloty, Boston Children’s Hospital, Boston, MA, Pediatric Rheumaology, St Christopher’s Hospital for Children/ Drexel College of Medicine, Philadelphia, PA, on behalf of CARRAnet Investigators, Palo Alto, CA. 2014
- The Presentation and Initial Treatment of Systemic Juvenile Idiopathic Arthritis According to Observational Data from the United States and the United Kingdom. Timothy Beukelman, Roberto Carrasco, Yukiko Kimura, Laura Schanberg, Wendy Thomson, Kimme L. Hyrich, For the CARRA Registry Investigators and For the CAPS Investigators Group, Pediatric Rheumatology, University of Alabama at Birmingham, Birmingham, AL, Centre for Musculoskeletal Research, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Duke University, Durham, NC, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Centre for Musculoskeletal Research, University of Manchester, Manchester, United Kingdom, CARRA, Durham, NC, CAPS, Manchester, United Kingdom.
- U.S. Geographic Trends in the Distribution and Treatment Practices of Juvenile Systemic Lupus Erythematosus: An Analysis of the Childhood Arthritis and Rheumatology Research Alliance Registry. Jennifer M.P. Woo, MPH, Ornella Rullo, MD, Deborah McCurdy, MD, for the CARRA Registry Investigators. 2014
Articles
- Childhood arthritis and rheumatology research alliance consensus treatment plans for new onset polyarticular juvenile idiopathic arthritis. Ringold S, Weiss PF, Colbert RA, Dewitt EM, Lee T, Onel K, Prahalad S, Schneider R, Shenoi S, Vehe RK, Kimura Y; for the Juvenile Idiopathic Arthritis Research Committee of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Arthritis Care Res (Hoboken) 2013 Dec 10. doi:10.1002/acr.22259. PMID: 24339215
- Extended report: Disease activity assessment in childhood vasculitis: development and preliminary validation of the Paediatric Vasculitis Activity Score (PVAS). Dolezalova P, Price-Kuehne FE, Özen S, Benseler SM, Cabral DA, Anton J, Brunner J, Cimaz R, O’Neil KM, Wallace CA, Wilkinson N, Eleftheriou D, Demirkaya E, Böhm M, Krol P, Luqmani RA, Brogan PA. Ann Rheum Dis 2013 72:10 1628-1633. Published Online First: 25 October 2012 doi:10.1136/annrheumdis-2012-202111
- Secondary analysis of APPLE study suggests atorvastatin may reduce atherosclerosis progression in pubertal lupus patients with higher C reactive protein. Ardoin SP, Schanberg LE, Sandborg CI, Barnhart HX, Evans GW, Yow E, Mieszkalski KL, Ilowite NT, Eberhard A, Imundo LF, Kimura Y, Levy D, von Scheven E, Silverman E, Bowyer SL, Punaro L, Singer NG, Sherry DD, McCurdy DK, Klein-Gitelman M, Wallace CA, Silver RM, Wagner-Weiner L, Higgins GC, Brunner HI, Jung L, Soep JB, Reed AM, Thompson SD; for the APPLE investigator. Ann Rheum Dis 2013 Feb 22. [Epub ahead of print] PMID: 23436914
- Annexin A5 anticoagulant activity in children with Systemic Lupus Erythematosus and the association with antibodies to domain I of ß2-glycoprotein I. Wahezi D, Ilowite NT, Wu X, Pelkmans L, Laat B, Schanberg LE, Rand J; for the Atherosclerosis Prevention in Pediatric Lupus Erythematosus Investigators. Lupus 2013 May 20. [Epub ahead of print] PMID: 23690366
- Pulmonary hypertension and other potentially fatal pulmonary complications in systemic juvenile idiopathic arthritis. Y Kimura, JE Weiss, K Haroldson, T Lee, M Punaro, S Oliveira, E Rabinovich, M Riebschleger, J Antón, P Blier, V Gerloni, MM Hazen, E Kessler, K Onel, MH Passo, RM Rennebohm, CA Wallace, P Woo, N Wulffraat, and the CARRAnet Investigators. Arthritis Care Res 2013 May;65(5):745-52. doi: 10.1002/acr.21889. PMID: 23139240
- Race, ethnicity, and disease outcomes in juvenile idiopathic arthritis: A cross-sectional analysis of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Ringold S, Beukelman T, Nigrovic PA, Kimura Y; CARRA Registry Site Principal Investigators. J Rheumatology 2013 Jun; 40(6):936-42. doi: 10.3899/jrheum.121147. Epub 2013 Apr 15. PMID: 23588937
- Using registries to identify adverse events in rheumatic diseases. Lionetti G, Kimura Y, Schanberg LE, Beukelman T, Wallace CA, Ilowite NT, Winsor J, Fox K, Natter M, Sundy JS, Brodsky E, Curtis JR, Del Gaizo V, Iyasu S, Jahreis A, Meeker-O’Connell A, Mittleman BB, Murphy BM, Peterson ED, Raymond SC, Setoguchi S, Siegel JN, Sobel RE, Solomon D, Southwood TR, Vesely R, White PH, Wulffraat NM, Sandborg CI. Pediatrics 2013 doi: 10.1542/peds.2013-0755. Published online October 21, 2013. PMID:24144710
- 2013 update of the 2011 American College of Rheumatology recommendations for the treatment of Juvenile Idiopathic Arthritis: Recommendations for the medical therapy of children with systemic Juvenile Idiopathic Arthritis and tuberculosis screening among c. Ringold S, Weiss PF, Beukelman T, DeWitt EM, Ilowite NT, Kimura Y, Laxer EM, Lovell DJ, Nigrovic PA, Robinson AB, Vehe RK. Arthritis Care Res (Hoboken) 2013 Oct;65(10):1551-63. doi: 10.1002/acr.22087. PMID: 24078300
- Risk markers of juvenile idiopathic arthritis-associated uveitis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Angeles-Han ST, Pelajo CF, Vogler LB, Rouster-Stevens K, Kennedy C, Ponder L, McCracken C, Lopez-Benitez J, Drews-BotschC, Prahalad S, for the CARRA Registry Investigators. The Journal of Rheumatology 2013 40:12; doi:10.3899/jrheum.130302. Epub 2013 Nov 01. PMID:24187099
- Evaluation of the assocation between Hispanic ethnicity and disease activity and severity in a large cohort of patients with juvenile idiopathic arthritis. Pelajo CF, Angeles-Han ST, Prahalad S, Sgarlat CM, Davis TE, Miller LC, Lopez-Benitez JM. Rheumatol Int 2013 Oct;33(10):2549-54. doi: 10.1007/s00296-013-2773-5. Epub 2013 May 10
Abstracts
- A Pilot Study Of Juvenile Localized Scleroderma (jLS) Consensus Treatment Plans. Suzanne C. Li, Kathryn S. Torok, Mara L Becker, Fatma Dedeoglu, Robert C. Fuhlbrigge, Gloria C. Higgins, Sandy D. Hong, Maria F. Ibarra, Ronald M. Laxer, Thomas G. Mason II, Elena Pope, Marilynn G. Punaro, C. Egla Rabinovich, Katie G. Stewart, Christina Kelsey, Brian Feldman, Themba Nyrienda and Knut M. Wittkowski, Pediatrics, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Scleroderma Center of Pittsburgh, Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, Clinical Pharmacology and Rheumatology, Children’s Mercy Hospital, Kansas City, MO, Division of Immunology, Boston Children’s Hospital, Boston, MA, Pediatric Rheumatology, Childrens Hospital, Boston, MA, Pediatric Rheumatology Ohio State University, Nationwide Childrens Hosp, Columbus, OH, Pediatrics-Rheumatology, U of Iowa Children’s Hosp, Iowa City, IA, Pediatric Rheumatolgy, Children’s Mercy Hospital, Kansas City, MO, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada,Rheumatology, Mayo Clinic Rochester, Rochester, MN, Dermatology, The Hospital for Sick Children, Toronto, ON, Canada, Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, Pediatrics, University of Texas Southwestern Medical Center, Dallas, TX, Duke University Medical Center, Durham, NC, Pediatric Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh, PA, Rheumatology, Hospital for Sick Kids, Toronto, ON, Canada, Research, Hackensack University Medical Center, Hackensack, NJ, Center for Clinical and Translational Science, Rockefeller University, New York, NY. 2013
- Comparison Of Remission Rates For Pediatric Membranous Plus Proliferative Lupus Nephritis Versus Isolated Proliferative Lupus Nephritis: An Analysis Of The Childhood Arthritis and Rheumatism Research Alliance Registry. Alexis Boneparth, Norman T. Ilowite and The CARRA Registry Investigators,Pediatrics, The Children’s Hospital at Montefiore, Bronx, NY, Duke Clinical Research Institute, Durham, NC. 2013
- Phenotypic Cluster Analysis Of Juvenile Idiopathic Arthritis: Relationship To International Leagues Of Associations For Rheumatology Classification Criteria. Jay Mehta, Juan Lin, Norman T. Ilowite, and for The CARRA Registry Investigators,Pediatrics, Children’s Hospital at Montefiore/Albert Einstein College of Medicine, Bronx, NY, Epidemiology & Population Health, Albert Einstein College of Medicine, Bronx, NY,Pediatrics, Albert Einstein College of Medicine, Bronx, NY, Pediatrics, The Children’s Hospital at Montefiore, Bronx, NY, Multiple Affiliations, Palo Alto, CA. 2013
- Pilot Phase Outcomes From The ACR/Carra Inter-Institutional Mentoring Program In Pediatric Rheumatology. Peter A. Nigrovic, Eyal Muscal, Lakshmi N. Moorthy, Sampath Prahalad, Marisa S. Klein-Gitelman, Meredith P. Riebschleger, B. Anne Eberhard and Rayfel Schneider,Division of Immunology, Boston Children’s Hospital, Boston, MA, Division of Rheumatology, Immunology, and Allergy, Brigham and Women’s Hospital, Boston, MA,TCH Pediatric Rheum Center, Baylor College of Medicine, Houston, TX, Pediatric Rheumatology, Robert Wood Johnson Medical School-Rutgers University, New Brunswick, NJ, Pediatrics, Emory Children’s Center, Atlanta, GA, Division of Rheumatology, Children’s Memorial Hospital, Chicago, IL, Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI, Cohen Children’s Hospital Medical Center, New Hyde Park, NY, Pediatric Rheumatology Collaborative Study Group (PRCSG), Cincinnati, OH, Canada. 2013
Articles
- Enthesitis-related arthritis is associated with higher pain intensity and poorer health status in comparison with other categories of Juvenile Idiopathic Arthritis: The Childhood Arthritis and Rheumatology Research Alliance Registry. Weiss PF, Beukelman T, Schanberg LE, Kimura Y, Colbert RA; for the CARRA Registry Investigators. J Rheumatol 2012 Dec; 39(12):2341-2351. Epub 2012 Oct 15. PMID: 23070991
- Consensus treatment plans for induction therapy of newly diagnosed proliferative Lupus Nephritis in Juvenile Systemic Lupus Erythematosus. Mina R, von Scheven E, Ardoin SP, Eberhard BA, Punaro M, Ilowite N, Hsu J, Klein-Gitelman M, Moorthy LN, Muscal E, Radhakrishna SM, Wagner-Weiner L, Adams M, Blier P, Buckley L, Chalom E, Chédeville G, Eichenfield A, Fish N, Henrickson M, Hersh AO, Hollister R, Jones O, Jung L, Levy D, Lopez-Benitez J, McCurdy D, Miettunen PM, Quintero-del Rio AI, Rothman D, Rullo O, Ruth N, Schanberg LE, Silverman E, Singer NG, Soep J, Syed R, Vogler LB, Yalcindag A, Yildirim-Toruner C, Wallace CA, Brunner HI; Carra SLE Subcommittee. Arthritis Care & Research 2012 Vol. 64, No. 3, March 2012, pp 375–383. doi: 10.1002/acr.21558 © 2012, American College of Rheumatology PMID: 22162255
- An i2b2-based, generalizable, open source, self-scaling chronic disease registry. Natter MD, Quan J, Ortiz DM, Bousvaros A, Ilowite NT, Inman CJ, Marsolo K, McMurry AJ, Sandborg CI, Schanberg LE, Wallace CA, Warren RW, Weber GM, Mandl KD. J Am Med Inform Assoc 2012 Jun 25 PMID: 22733975
- Use of Immunosuppressive Medications and Prevalence of Disability in Patients with pediatric Systemic Lupus Erythematosus: an Initial Analysis of the CARRANet Registry. Hersh A, Son MB, Brunner H, Eberhard A and von Scheven E for the CARRANet Investigators. Pediatr Rheumatol Online J 2012 10(Suppl 1): A28. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A28. PubMed Central PMC3403066
- Race is a Risk Factor for Calcinosis in Patients with JDM – Early Results from the CARRAnet Registry Study. Hoeltzel MF, Becker ML, Robinson AB, Huber A, Feldman BM, Reed AM, the Juvenile Myositis CARRA Subgroup, and the CARRAnet Investigators. Pediatric Rheumatology 2012 10(Suppl 1):A65
- Diagnostic evaluation and medication usage in a cohort of subjects with JDM from the CARRAnet Registry. Robinson AB, Hoeltzel MF, Reed AM, Huber A, Feldman B, and the Juvenile Myositis CARRA Subgroup for the CARRAnet Investigators. Pediatr Rheumatol Online J 2012 10(Suppl 1): A64. Published online 2012 July 13. doi:10.1186/1546-0096-10-S1-A64. PubMed Central PMC3403047
- Clinical Characteristics of Children with Juvenile Dermatomyositis Recruited within the First 7 Months of the CARRAnet Registry. Hoeltzel MF, Becker ML, Robinson AB, Huber A, Feldman BM, Reed AM, and the Juvenile Myositis CARRA Subgroup for the CARRAnet Investigators. Pediatric Rheumatology Online J 2012 10(Suppl 1): A12. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A12. PubMed Central PMC3403045
- Description of the Localized Scleroderma subgroup of CARRAnet. Wu EY, Rabinovich CE, Torok KS, Li SC, Fuhlbrigge RC and CARRAnet Investigators. Pediatric Rheumatology Online J 2012 10(Suppl 1): A71. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A71. PubMed Central PMC3402948
- Consensus treatment plans for new-onset systemic Juvenile Idiopathic Arthritis. DeWitt EM, Kimura Y, Beukelman T, Nigrovic PA, Onel K, Prahalad S, Schneider R, Stoll ML, Angeles-Han S, Milojevic D, Schikler KN, Vehe RK, Weiss JE, Weiss P, Ilowite NT, Wallace CA; Juvenile Idiopathic Arthritis Disease-specific Research Committee of Childhood Arthritis Rheumatology and Research Alliance. Arthritis Care Res (Hoboken) 2012 Jul; 64(7):1001-10. doi: 10.1002/acr.21625. PMID: 22290637
- Development of consensus treatment plans for Juvenile Localized Scleroderma: A roadmap toward comparative effectiveness studies in Juvenile Localized Scleroderma. Li SC, Torok KS, Pope E, Dedeoglu F, Hong S, Jacobe HT, Rabinovich CE, Laxer RM, Higgins GC, Ferguson PJ, Lasky A, Baszis K, Becker M, Campillo S, Cartwright V, Cidon M, Inman CJ, Jerath R, O’Neil KM, Vora S, Zeft A, Wallace CA, Ilowite NT, Fuhlbrigge RC; Childhood Arthritis and Rheumatology Research Alliance (CARRA) Localized Scleroderma Workgroup. Arthritis Care & Research 2012 Vol. 64, No. 8, August 2012, pp 1175–1185. doi: 10.1002/acr.21687. PMID: 22505322. PubMed Central PMC3724335
- Disease-modifying antirheumatic drug use in the treatment of Juvenile Idiopathic Arthritis: A cross-sectional analysis of the CARRA Registry. Beukelman T, Ringold S, Davis TE, DeWitt EM, Pelajo CF, Weiss PF and Kimura Y, for the CARRA Registry Investigators. The Journal of Rheumatology 2012 August 1, 2012. doi: 10.3899/jrheum.120110. PMID: 22859354
- The Childhood Arthritis & Rheumatology Research Alliance Network Registry: Demographics and Characteristics of the Initial 6-month Cohort. Natter MD, Winsor JR, Fox KA, Ilowite NT, Mandl KD, Mieszkalski KL, Sandborg CI, Sundy JS, Wallace CA, Schanberg LE, and CARRAnet Investigators Group. Pediatr Rheumatol Online J 2012 10(Suppl 1): A57. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A57. PubMed Central PMC3403051
- Disease Characteristics and Medication Use in a Multicenter Cohort of Children with Juvenile Idiopathic Arthritis (JIA): Preliminary Analyses from the CARRAnet Registry. Ringold S, Beukelman T, Dewitt EM, Natter M, Nigrovic PA, Kimura Y, and CARRAnet Investigators. Pediatr Rheumatol Online J 2012 10(Suppl 1): A46. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A46 PubMed Central PMC3403060
- Consensus treatments for moderate Juvenile Dermatomyositis: Beyond the first two months. Results of the second Childhood Arthritis and Rheumatology Research Alliance consensus conference. Huber AM, Robinson AB, Reed AM, Abramson L, Bout-Tabaku S, Carrasco R, Curran M, Feldman BM, Gewanter H, Griffin T, Haines K, Hoeltzel MF, Isgro J, Kahn P, Lang B, Lawler P, Shaham B, Schmeling H, Scuccimarri R, Shishov M, Stringer E, Wohrley J, Ilowite NT, Wallace C; Juvenile Dermatomyositis Subcommittee of the Childhood Arthritis and Rheumatology Research Alliance. Arthritis Care & Research 2012 Vol 64, No. 4, Apr 2012; pp 546-53. doi: 10.1002/acr.20695. PMID: 22076847
- Trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis Arthritis Rheum. Wallace CA, Giannini EH, Spalding SJ, Hashkes PJ, O’Neil KM, Zeft AS, Szer IS, Ringold S, Brunner HI, Schanberg LE, Sundel RP, Milojevic D, Punaro MG, Chira P, Gottlieb BS, Higgins GC, Ilowite NT, Kimura Y, Hamilton S, Johnson A, Huang B, Lovell DJ; Childhood Arthritis and Rheumatology Research Alliance. Arthritis Rheum 2012 Jun; 64(6):2012-21. doi: 10.1002/art.34343. Epub 2011 Dec 19. PMID: 22183975
- Use of atorvastatin in systemic lupus erythematosus in children and adolescents. Schanberg LE, Sandborg C, Barnhart HX, Ardoin SP, Yow E, Evans GW, Mieszkalski KL, Ilowite NT, Eberhard A, Imundo LF, Kimura Y, von Scheven E, Silverman E, Bowyer SL, Punaro M, Singer NG, Sherry DD, McCurdy D, Klein-Gitelman M, Wallace C, Silver R, Wagner-Weiner L, Higgins GC, Brunner HI, Jung L, Soep JB, Reed AM, Provenzale J, Thompson SD; Atherosclerosis Prevention in Pediatric Lupus Erythematosus Investigators. Arthritis Rheum 2012 Vol. 64, No. 1 January 2012, pp 285-296 doi: 10.1002/art.30645. PMID: 22031171
Abstracts
- Adverse Events in Juvenile Idiopathic Arthritis: Results From the Enhanced Drug Safety Surveillance (EDSS) Pilot Project. Sarah Ringold, Audrey F. Hendrickson, Carol A. Wallace and Rachel E. Sobel,Pediatrics, Seattle Children’s Hospital/Univ of Washington, Seattle, WA, Rheumatology, Seattle Children’s Research Institute, Seattle, WA, Pediatrics, Seattle Childrens Hospital, Seattle, WA, Epidemiology, Worldwide Safety Strategy, Pfizer, Inc., New York, NY. 2012
- Ancestral Group Differences in Pediatric SLE Early Disease Severity: An Analysis of the Carranet Registry. Jennifer M.P. Woo, Alice DC Hoftman, Emily von Scheven, Deborah K. McCurdy, Ornella J. Rullo and CARRA Registry Investigators, Pediatric Rheumatology, Mattel Children’s Hospital, University of California, Los Angeles, Los Angeles, CA, Pediatric Rheumatology, University of California, San Francisco, San Francisco, CA, Pediatric Rheumatology, UCLA Division of Pediatric Rheumatology, Los Angeles, CA, Durham, NC. 2012
- Choice of Systemic JIA Treatment Among Childhood Arthritis and Rheumatology Research Alliance (CARRA) Rheumatologists. Jennifer E. Weiss, Esi M. Morgan DeWitt, Timothy Beukelman, Laura E. Schanberg, Rayfel Schneider and Yukiko Kimura, Pediatric Rheumatology, Hackensack University Medical Center, Hackensack, NJ, Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric Rheumatology, University of Alabama at Birmingham, Birmingham, AL, Pediatrics, Duke University Medical Center, Durham, NC, Pediatric Rheumatology Collaborative Study Group (PRCSG), Cincinnati, OH, Canada, Pediatric Rheumatology, Joseph M. Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ. 2012
- Distribution of Vasculitides in Childhood Arthritis and Rheumatology Research Alliance-Affiliated Pediatric Rheumatology Centers in the United States. Melissa A. Lerman, Peter A. Merkel and for the CARRA Registry Investigators,Division of Rheumatology, Children’s Hospital of Philadelphia, Philadelphia, PA,University of Pennsylvania, Philadelphia, PA, Stanford, CA. 2012
- Pediatric Rheumatology Practitioners Experience with Biologics in Juvenile Dermatomyositis: Survey Results. Anjali Patwardhan, Kelly A. Rouster-Stevens, Harry L. Gewanter, Grant D. Syverson, Renee F. Modica, Kara M. Schmidt and Charles H. Spencer, Pediatric Rheumatology, Nationwide Childrens Hospital, Columbus, OH, Pediatric Rheumatologist, Emory-Children’s Center, Atlanta, GA, Pediatric & Adolescent HP, Pediatric & Adolescent HP, Midlothian, VA, Pediatric Rheumatology, Medical College of Wisconsin, Wauwatosa, WI,Pediatric Rheumatology, University of Florida, Gainesville, FL, Pediatric Rheumatology, Univ of Louisville, Louisville, KY, Rheumatology, Nationwide Childrens Hospital, Columbus, OH. 2012
- Potentially Fatal Pulmonary Complications in Systemic Juvenile Idiopathic Arthritis. Yukiko Kimura, Jennifer E. Weiss, Kathryn L. Haroldson, Tzielan C. Lee, Marilynn G. Punaro, Sheila K. Feitosa de Oliveira, C. Egla Rabinovich, Meredith P. Riebschleger, Jordi Anton, Peter R. Blier, Valeria Gerloni, Melissa M. Hazen, Elizabeth Kessler, Karen Onel, Murray H. Passo, Robert M. Rennebohm, Carol A. Wallace, Patricia Woo, Nico M. Wulffraat and CARRAnet Investigators, Pediatric Rheumatology, JM Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ,Pediatric Rheumatology, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Stanford University School of Medicine, Stanford, CA, Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX,Pediatric Rheumatology, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil,Pediatric Rheumatology, Duke University Medical Center, Durham, NC, Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI,Rheumatology, Hospital Sant Joan de Deu, Barcelona, Spain, Pediatrics, Baystate Children’s Hospital, Springfield, MA, Pediatric Rheumatology, Gaetano Pini Chair of Rheum, Milan, Italy, Division of Immunology, Boston Children’s Hospital, Boston, MA,Pediatric Rheumatology, Medical College of Wisconsin, Milwaukee, WI, Pediatric Rheumatology, University of Chicago Hospitals, Chicago, IL, Pediatrics, Medical University of South Carolina, Charleston, SC, Pediatric Rheumatology, Alberta Children’s Hospital, University of Calgary, Calgary, AB, Canada, Pediatrics, Seattle Childrens Hospital, Seattle, WA, Division of Infection and Immunity, University College London, London, United Kingdom, Pediatric Immunology, University Medical Center Utrecht, Utrecht, Netherlands, Durham. 2012
- Provisions of Quality Driven Care in Childhood-Onset Systemic Lupus Erythematosus. Matthew C. Hollander, Jessica M. Sage, Alexandria J. Greenler, Tadej Avcin, Michael W. Beresford, Graciela Espada, Marisa S. Klein-Gitelman, Michael Henrickson, Tsz-Leung Lee, Joshua D. Pendl, Marilynn G. Punaro, Jennifer L. Huggins, Anne M. Stevens and Hermine Brunner, Division of Rheumatology, Seattle Children’s Hospital, Seattle, WA, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, International Investigator Consortium for MAS Diagnostic Criteria, Ljubljana, Slovenia, Paediatric Rheumatology, Alder Hey Children’s NHS Foundation Trust, Liverpool, United Kingdom, Rheumatology Section, Childrens Hosp Ricardo Gutierrez, Buenos Aires, Argentina, Division of Rheumatology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, MLC , Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Paediatrics and Adolescent Med, Queen Mary Hospital, Hong Kong, Hong Kong, Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, Pediatric Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatrics, University of Washington, Seattle, WA. 2012
- The Current State of Mentoring Among Pediatric Rheumatology Fellows and Junior Faculty in the United States and Canada. Meredith P. Riebschleger, Eyal Muscal, Matthew M. Davis, Hermine Brunner, B. Anne Eberhard, C.J. Inman, Marisa S. Klein-Gitelman, Lakshmi N. Moorthy, Marc D. Natter, Sampath Prahalad, Rayfel Schneider and Peter A. Nigrovic, Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI, TCH Pediatric Rheum Center, Baylor College of Medicine, Houston, TX, University of Michigan, Ann Arbor, MI, Pediatric Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Cohen Children’s Hospital Medical Center, New Hyde Park, NY,Pediatric Administration, University of Utah, Salt Lake City, UT, Division of Rheumatology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL,Pediatric Rheumatology, Robert Wood Johnson Medical School-Rutgers University, New Brunswick, NJ, Intelligent Health Labs, Children’s Hospital Boston, Boston, MA,Pediatrics, Emory Children’s Center, Atlanta, GA, Pediatric Rheumatology Collaborative Study Group (PRCSG), Cincinnati, OH, Canada, Division of Rheumatology, Immunology, and Allergy, Brigham and Women’s Hospital, Boston, MA. 2012
- Diagnostic evaluation and medication usage in a cohort of subjects with juvenile dermatomyositis from the CARRAnet registry. Angela B Robinson, Mark F Hoeltzel , Ann M Reed , Adam Huber , Brian M Feldman , Juvenile Myositis CARRA Subgroup. 2012
Articles
- 2011 American College of Rheumatology recommendations for the treatment of juvenile idiopathic arthritis: initiation and safety monitoring of therapeutic agents for the treatment of arthritis and systemic features. Beukelman T, Patkar NM, Saag KG, Tolleson-Rinehart S, Cron RQ, DeWitt EM, Ilowite NT, Kimura Y, Laxer RM, Lovell DJ, Martini A, Rabinovich CE, Ruperto N. Arthritis Care & Research 2011 Vol. 63, No. 4, April 2011, pp 465–482 doi: 10.1002/acr.20460. PMID: 21452260
- Initial evaluation of an ultrasound measure for assessing the activity of skin lesions in juvenile localized scleroderma. Li SC, Liebling MS, Haines KA, Weiss JE, Prann A.. Arthritis Care Res (Hoboken) 2011 May;63(5):735-42. doi: 10.1002/acr.20407 PMID: 21557528
- American College of Rheumatology provisional criteria for defining clinical inactive disease in select categories of juvenile idiopathic arthritis. Wallace CA, Giannini EH, Huang B, Itert L, Ruperto N; Childhood Arthritis Rheumatology Research Alliance; Pediatric Rheumatology Collaborative Study Group; Paediatric Rheumatology International Trials Organisation. Arthritis Care & Research 2011 Vol. 63, No. 7, July 2011, pp 929–936, doi: 10.1002/acr.20497. PMID: 21717596
- Extended report: Efficacy of intravenous IG therapy in juvenile dermatomyositis. Lam CG, Manlhiot C, Pullenayegum EM, Feldman BM. Ann Rheum Dis 2011 70:12 2089-2094. Published Online First: 6 October 2011. doi:10.1136/ard.2011.153718
Abstracts
- Clinical characteristics of children with juvenile dermatomyositis recruited within the first 7 months of the CARRAnet registry. Mark F Hoeltzel, Mara L Becker, Angela B Robinson, Brian M Feldman, Adam Huber, and Ann M Reed, Juvenile Myositis CARRA Subgroup , CARRAnet Investigators. Pediatr Rheumatol Online J 2012 10(Suppl 1): A12. Published online 2012 Jul 13. doi: 10.1186/1546-0096-10-S1-A12
- Disease characteristics and medication use in a multicenter cohort of children with juvenile idiopathic arthritis (JIA): preliminary analyses from the CARRAnet registry. Sarah Ringold*, Timothy Beukelman , Esi M Morgan DeWitt , Marc Natter , Peter A Nigrovic , Yukiko Kimura , CARRAnet Investigators. Ringold et al.. Pediatric Rheumatology 2011 10(Suppl 1):A46 http://www.ped-rheum.com/content/10/S1/A46
- Disease Modifying Anti-Rheumatic Drug Use in the Treatment of Juvenile Idiopathic Arthritis: A Cross-Sectional Analysis of the CARRA Registry. Beukelman T, Ringold S, Davis TE, DeWitt EM, Pelajo CF, Weiss PF, Kimura Y. CARRA Registry Investigators. J Rheumatol 2012 Sep;39(9):1867-74. Epub 2012 Aug 1
- Race is a risk factor for calcinosis in patients with JDM – early results from the CARRAnet registry study. Mark F Hoeltzel, Mara L Becker, Angela B Robinson, Brian M Feldman, Adam Huber, and Ann M Reed, Juvenile Myositis CARRA Subgroup , CARRAnet Investigators. Pediatr Rheumatol Online J 2012 10(Suppl 1): A65. Published online 2012 Jul 13. doi: 10.1186/1546-0096-10-S1-A65
- The childhood arthritis & rheumatology research alliance network registry: demographics and characteristics of the initial 6-month cohort. Marc D Natter, Jane R Winsor, Kathleen A Fox, Norman T Ilowite, Kenneth D Mandl, Kelly L Mieszkalski, Christy I Sandborg, John S Sundy, Carol A Wallace, and Laura E Schanberg, CARRAnet Investigators Group. Pediatr Rheumatol Online J 2012 10(Suppl 1): A57. Published online 2012 Jul 13. doi: 10.1186/1546-0096-10-S1-A57
Articles
- Laboratory markers of cardiovascular risk in pediatric SLE: the APPLE baseline cohort. SP Ardoin, LE Schanberg, C. Sandborg, E. Yow, HX Barnhart, KL Mieszkalski, NT Ilowite, E. von Scheven, A. Eberhard, DM Levy, Y. Kimura, E. Silverman, SL Bowyer, L. Punaro, NG Singer, DD Sherry, D. McCurdy, M. Klein-Gitelman, C. Wallace, R. Silver, L. Wagner-Weiner, GC Higgins, HI Brunner, LK Jung, L. Imundo, JB Soep, AM Reed and APPLE investigators. Lupus 2010 2010 19: 1315; doi: 10.1177/0961203310373937. PMID: 2086120
- Protocols for the initial treatment of moderately severe juvenile dermatomyositis: results of CARRA Consensus Conference. Huber AM, Giannini EH, Bowyer SL, Kim S, Lang B, Lindsley CB, Pachman LM, Pilkington C, Reed AM, Rennebohm RM, Rider LG, Wallace CA, Feldman BM. Arthritis Care & Research 2010 Vol. 62, No. 2, February 2010, pp 219-225 doi: 10.1002/acr.20071. PMID: 20191521
- Changes in the pattern of DNA methylation associate with twin discordance in systemic lupus erythematosus. Javierre BM, Fernandez AF, Richter J, Al-Shahrour F, Martin-Subero JI, Rodriguez-Ubreva J, Berdasco M, Fraga MF, O’Hanlon TP, Rider LG, Jacinto FV, Lopez-Longo FJ, Dopazo J, Forn M, Peinado MA, Carreño L, Sawalha AH, Harley JB, Siebert R, Esteller M, Miller FW and Ballestar E. Genome Research 2010 20: 170-179. PMID: 20028698
- Sonographic evaluation of pediatric localized scleroderma: preliminary disease assessment measures. Li SC, Liebling MS, Ramji F, Opitz S, Mohanta A, Kornyat T, Zhang S, Dempsey-Robertson M, Hamer C, Edgerton S, Jarrin J, Malone M, Doria AS. Pediatric Rheumatology 2010 8:14 doi: 10.1186/1546-0096-8-14. PMID: 20423513
- Treatment of pediatric localized scleroderma: results of a survey of North American pediatric rhuematologists. Li SC, Feldman BM, Higgins GC, Haines KA, Punaro MG, O’Neil KM. The Journal of Rhuematology 2010 31:1, doi: 10.3899/jrheum.090708 PMID: 19918041
- Monitoring the long-term safety of therapies for children with juvenile idiopathic arthritis: time for a consolidated patient registry. Smith MY, Sobel RE, Wallace CA. Arthritis Care & Research 2010 Vol. 62, NO. 6, June 2010, pp 800-804, doi: 10.1002/acr.20128 PMID: 20535790
- Anesthesia for intra-articular cortcosteriod injections in juvenile idiopathic arthritis: a survey of pediatric rheumatologists. Weiss JE, Uribe AG, Malleson PN, Kimura Y. Peditaric Rheumatology 2010 8:3, doi: 10.1186/1546-0096-8-3. PMID: 20142994
Articles
- Classification, presentation and initial treatment of Wegner’s granulomatosis in childhood: an ARChiVe project. Cabral DA, Uribe AG, Benseler S, O’Neil KM, Hashkes PJ, Higgins G, Zeft AS, Lovell DJ, Kingsbury DJ, Stevens A, McCurdy D, Chira P, Abramson L, Arkachaisri T, Campillo S, Eberhard A, Hersh AO, Huber AM, Kim S, Klein-Gitelman M, Levy DM, Li SC, Mason T, Dewitt EM, Muscal E, Nassi L, Reiff A, Schikler K, Singer NG, Wahezi D, Woodward A; ARChiVe (A Registry for Childhood Vasculitis: e-entry) Investigators Network. Arthritis Rheumatism 2009 60:3413-24. PMID: 19877069
- Premature atherosclerosis in pediatric systemic lupus erythematosus: risk factors for increased carotid intima-media thickness in the atherosclerosis prevention in pediatric lupus erythematosus cohort. Schanberg LE, Sandborg C, Barnhart HX, Ardoin SP, Yow E, Evans GW, Mieszkalski KL, Ilowite NT, Eberhard A, Levy DM, Kimura Y, von Scheven E, Silverman E, Bowyer SL, Punaro L, Singer NG, Sherry DD, McCurdy D, Klein-Gitelman M, Wallace C, Silver R, Wagner-Weiner L, Higgins GC, Brunner HI, Jung L, Soep JB, Reed A; Atherosclerosis Prevention in Pediatric Lupus Erythematosus Investigators. Arthritis & Rheumatism 2009 Vol. 60, No. 5, May 2009, pp 1496–1507 doi: 0.1002/art.24469. PMID: 19404953
Articles
Abstracts
- Outcomes of juvenile rheumatoid arthritis (JRA): changing treatment patterns and outcomes. Gottlieb, B., Sison, C., Higgins, G., Huber, A., Kimura, Y., Lovell, D. for The Long-Term JRA Outcome Study Group. Arthritis and Rheumatism 2005 52: S81
- Antiphospholipid antibodies in childhood onset SLE: results of a CARRA survey Presented at 2005 PAS Scientific Meeting for Pediatric Research Annual Scientific Meeting, Washington, DC, May 15, 2005. O’Neil, K.M. and CARRA Investigators. 2005 (Abst. # 1486)
- Barriers in NIH-funded multicenter pediatric trials: Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) case study. Sandborg, C., Schanberg, L., McLendon, C. Arthritis and Rheumatism 2005 52: S537
- Antiphospholipid antibodies (APL Abs) in children with SLE: results of a CARRA survey Presented at American College of Rheumatology 2004 Annual Scientific Meeting, San Antonio, TX. O’Neil KM, Participating CARRA Investigators. Arthritis Rheum 2005 50:9 Suppl. (Abst. # 1380)
- Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) trial design. Schanberg, L., Sandborg, C., Allen, A., Riley, W., Provencale, J., McLendon, C., Li, J.. Arthritis Rheum 2005 50: S532