2016
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.
Notes
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.