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Member Publications

CARRA Related Publications back to 2015 can be found on this page. Publications prior to 2015 can be found on the archives page:

Publications Archive


2017 Publications

Full Length Articles

Boneparth, A. et al. Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists.

Orandi, 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 (2017) 15:30.

Zhao, Y., et al. Physicians’ Perspectives on the Diagnosis and Treatment of Chronic Nonbacterial Osteomyelitis. International Journal of Rheumatology.


Periodicals

Boneparth, A. et al. Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists.

Dermatologists, rheumatologists differ in management of pediatric discoid lupus erythematosus.


2016 Publications

Full Length 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: 2010-2013. J Rheumatology.

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.

Fitzpatrick, L., et al.Phenotypic Characterization of Juvenile Idiopathic Arthritis in African American Children. J Rheumatology.

Driest, K.D., et al.Factors associated with thrombosis in pediatric patients with systemic lupus erythematosus. Lupus.

Prahalad, S., et al.Familial autoimmunity in the Childhood Arthritis and Rheumatology Research Alliance registry. Pediatric Rheumatology.

Henderson, L.A., et al.Medication use in juvenile uveitis patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry. Pediatric Rheumatology.

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.

Nowell, W.B., et al.Reenergizing Research While Improving Patient Care Provider Magazine. June 2016.

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. November 2016

Kimura, Y. and Schanberg, L.E.The Future of Pediatric Rheumatology Grounded in Evolution of Childhood Arthritis and Rheumatology Research Alliance The Rheumatologist. Dececmber 15, 2016

Fotis, L., et al.Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting, Toronto, Canada. Pediatric Rheumatology. April 14-17, 2016


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

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

Tory, H., et al.Comparison of Patient and Physician Reported Global Disease Activity Measures in Juvenile Dermatomyositis 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

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

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

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

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

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

Moncrieffe, H., et al.Transcriptional profiling reveals monocyte signature associated with JIA patient poor response to methotrexate CARRA Annual Meeting 2016. 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

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

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

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

Janow, G., et al.The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis & Rheumatology Research Alliance Registry 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

Oberle, E.J., et al.Clinical course of juvenile dermatomyositis presenting as skin predominant disease 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

Oberle, E.J., et al.A Survey of musculoskeletal ultrasound practices of pediatric rheumatologists in North America CARRA Annual Meeting 2016. 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

Reed, A., et al.CARRA dermatomyositis CTP pilot study 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

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

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

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


2015 Publications

Articles

Stinson JN, et al. Assessment and management of pain in juvenile idiopathic arthritisPain Research & Management?: The Journal of the Canadian Pain Society. 2012;17(6):391-396.Sobel R, et al.

Novel Method to Collect Medication Adverse Events in Juvenile Arthritis: Results From the Childhood Arthritis and Rheumatology Research Alliance Enhanced Drug Safety Surveillance ProjectArthritis Care & Research. Volume 67, Issue 4, pages 529–537, April 2015

Ruth NM, et al. Practice Patterns and Approach to Kidney Biopsy in Lupus: a MWPNC and CARRA Collaboration.  Pediatric Rheumatology 2015, DOI 10.1186/s12969-015-0024-x

Tress JL and Sherry DD. The Cost of Research: A Survey of Participating Sites in a Nationwide Registry. The Journal of Rheumatology. Volume 42, Number 4, pages 702-705. April 2015


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).

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).

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).

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).

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)

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).

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. (2015)  PLoS ONE 10(11): e0142486. doi:10.1371/journal. pone.0142486

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).

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).

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).

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).

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).

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).

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).

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).

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).

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).

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).