Member 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

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).

Articles

Adding canakinumab to the Childhood Arthritis and Rheumatology Research Alliance  consensus treatment plans for systemic juvenile idiopathic arthritis: Comment on the article by DeWitt et al. Arthritis Care Res (Hoboken). 2014 Sep;66(9):1430-1.

Kimura Y, DeWitt EM, Beukelman T, Stoll ML, Nigrovic PA, Onel K, Prahalad S, Angeles-Han S, Schneider R; Juvenile Idiopathic Arthritis Disease-Specific Research Committee of the Childhood Arthritis and Rheumatology Research Alliance.

AMIGO: a novel approach to the mentorship gap in pediatric rheumatology. J Pediatr. 2014 Feb;164(2):226-7. Nigrovic PA, Muscal E, Riebschleger M, Moorthy LN, Brunner HI, Eberhard BA, Klein-Gitelman M, Prahalad S, Schneider R.

Childhood Arthritis and Rheumatology Research Alliance consensus treatment plans for new-onset polyarticular juvenile idiopathic arthritis. Arthritis Care Res (Hoboken). 2014 Jul;66(7):1063-72. Ringold S, Weiss PF, Colbert RA, DeWitt EM, Lee T, Onel K, Prahalad S, Schneider R, Shenoi S, Vehe RK, Kimura Y

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

Robinson AB, Hoeltzel MF, Wahezi DM, Becker ML, Kessler EA, Schmeling H, Carrasco R, Huber AM, Feldman BM, Reed AM; Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators.

Clinical features, treatment and outcome of macrophage activation syndrome complicating systemic juvenile idiopathic arthritis A multinational, multicenter study of 362 patients. Arthritis Rheumatol. 2014 Jul 30.  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.

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. J Rheumatol. 2014 Jun;41(6):1163-70. doi: 10.3899/jrheum.131503. Epub 2014 May 1. 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).

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. Lupus. 2014 Apr 11;23(9):898-904. Boneparth A, Ilowite N; for the CARRA Registry Investigators.

Development and retrospective validation of the juvenile spondyloarthritis disease activity (JSpADA) index. Arthritis Care Res (Hoboken). 2014 Jul 21. Weiss PF, Colbert RA, Xiao R, Feudtner C, Beukelman T, Morgan DeWitt E, Pagnini I, Wright TB, Wallace CA.

Performance of current guidelines for diagnosis of macrophage activation syndrome complicating systemic juvenile idiopathic arthritis. Arthritis Rheumatol. 2014 Oct;66(10):2871-80. 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.

Randomized, double-blind, placebo-controlled trial of the efficacy and safety of rilonacept in the treatment of systemic juvenile idiopathic arthritis. Arthritis Rheumatol. 2014 Sep;66(9):2570-9. 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.

Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada.J Rheumatol. 2014 Apr;41(4):768-79. doi: 10.3899/jrheum.130615. Epub 2014 Mar 1. Chira P, Ronis T, Ardoin S, White P.


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

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 Volume 66, Issue Supplement S3, page S117, March 2014

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

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

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  Vol. 66, No. S3, March 2014, 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

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, Volume 66, Issue Supplement S3, page S145, March 2014.

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. Vol. 66, No. S3, March 2014, p S102DOI 10.1002/art.38486© 2014, American College of Rheumatology

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

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

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.

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

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 Volume 66, Issue Supplement S3, page S134, March 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

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

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

Articles

Childhood arthritis and rheumatology research alliance consensus treatment plans for new onset polyarticular juvenile idiopathic arthritis. Arthritis Care Res (Hoboken); 2013 Dec 10. doi:10.1002/acr.22259. PMID: 24339215 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).

Risk markers of juvenile idiopathic arthritis-associated uveitis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. The Journal of Rheumatology 2013; 40:12; doi:10.3899/jrheum.130302. Epub 2013 Nov 01. PMID:24187099Angeles-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.

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 children receiving biologic medications. Arthritis Care Res (Hoboken). 2013 Oct;65(10):1551-63. doi: 10.1002/acr.22087. PMID: 24078300 Ringold S, Weiss PF, Beukelman T, DeWitt EM, Ilowite NT, Kimura Y, Laxer EM, Lovell DJ, Nigrovic PA, Robinson AB, Vehe RK.

Using registries to identify adverse events in rheumatic diseases. Pediatrics doi: 10.1542/peds.2013-0755. Published online October 21, 2013. PMID:24144710
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.

Race, ethnicity, and disease outcomes in juvenile idiopathic arthritis: A cross-sectional analysis of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. J Rheumatology 2013 Jun; 40(6):936-42. doi: 10.3899/jrheum.121147. Epub 2013 Apr 15. PMID: 23588937 Ringold S, Beukelman T, Nigrovic PA, Kimura Y; CARRA Registry Site Principal Investigators.

Pulmonary hypertension and other potentially fatal pulmonary complications in systemic juvenile idiopathic arthritisArthritis Care Res 2013 May;65(5):745-52. doi: 10.1002/acr.21889. PMID: 23139240 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.

Annexin A5 anticoagulant activity in children with Systemic Lupus Erythematosus and the association with antibodies to domain I of ß2-glycoprotein I. Lupus. 2013 May 20. [Epub ahead of print] PMID: 23690366 Wahezi D, Ilowite NT, Wu X, Pelkmans L, Laat B, Schanberg LE, Rand J; for the Atherosclerosis Prevention in Pediatric Lupus Erythematosus Investigators.

Secondary analysis of APPLE study suggests atorvastatin may reduce atherosclerosis progression in pubertal lupus patients with higher C reactive protein. Ann Rheum Dis. 2013 Feb 22. [Epub ahead of print] PMID: 23436914
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 investigators.

Extended report: Disease activity assessment in childhood vasculitis: development and preliminary validation of the Paediatric Vasculitis Activity Score (PVAS). Ann Rheum Dis 2013;72:10 1628-1633. Published Online First: 25 October 2012 doi:10.1136/annrheumdis-2012-202111 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


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

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

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

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

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. J Rheumatol. 2012 Dec; 39(12):2341-2351. Epub 2012 Oct 15. PMID: 23070991
Weiss PF, Beukelman T, Schanberg LE, Kimura Y, Colbert RA; for the CARRA Registry Investigators.

Disease-modifying antirheumatic drug use in the treatment of Juvenile Idiopathic Arthritis: A cross-sectional analysis of the CARRA Registry.
The Journal of Rheumatology August 1, 2012. doi: 10.3899/jrheum.120110. PMID: 22859354
Beukelman T, Ringold S, Davis TE, DeWitt EM, Pelajo CF, Weiss PF and Kimura Y, for the CARRA Registry Investigators.

Development of consensus treatment plans for Juvenile Localized Scleroderma: A roadmap toward comparative effectiveness studies in Juvenile Localized Scleroderma. Arthritis Care & Research Vol. 64, No. 8, August 2012, pp 1175–1185. doi: 10.1002/acr.21687. PMID: 22505322. PubMed Central PMC3724335
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.

Consensus treatment plans for new-onset systemic Juvenile Idiopathic Arthritis. Arthritis Care Res (Hoboken). 2012 Jul; 64(7):1001-10. doi: 10.1002/acr.21625. PMID: 22290637
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.

Description of the Localized Scleroderma subgroup of CARRAnet. 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
Wu EY, Rabinovich CE, Torok KS, Li SC, Fuhlbrigge RC and CARRAnet Investigators.

Clinical Characteristics of Children with Juvenile Dermatomyositis Recruited within the First 7 Months of the CARRAnet RegistryPediatric Rheumatology Online J. 2012; 10(Suppl 1): A12. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A12. PubMed Central PMC3403045
Hoeltzel MF, Becker ML, Robinson AB, Huber A, Feldman BM, Reed AM, and the Juvenile Myositis CARRA Subgroup for the CARRAnet Investigators.

Diagnostic evaluation and medication usage in a cohort of subjects with JDM from the CARRAnet RegistryPediatr Rheumatol Online J. 2012; 10(Suppl 1): A64. Published online 2012 July 13. doi:10.1186/1546-0096-10-S1-A64. PubMed Central PMC3403047
Robinson AB, Hoeltzel MF, Reed AM, Huber A, Feldman B, and the Juvenile Myositis CARRA Subgroup for the CARRAnet Investigators.

Race is a Risk Factor for Calcinosis in Patients with JDM – Early Results from the CARRAnet Registry StudyPediatric Rheumatology 2012, 10(Suppl 1):A65.
Hoeltzel MF, Becker ML, Robinson AB, Huber A, Feldman BM, Reed AM, the Juvenile Myositis CARRA Subgroup, and the CARRAnet Investigators.

Use of Immunosuppressive Medications and Prevalence of Disability in Patients with pediatric Systemic Lupus Erythematosus: an Initial Analysis of the CARRANet RegistryPediatr Rheumatol Online J. 2012; 10(Suppl 1): A28. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A28. PubMed Central PMC3403066
Hersh A, Son MB, Brunner H, Eberhard A and von Scheven E for the CARRANet Investigators.

The Childhood Arthritis & Rheumatology Research Alliance Network Registry: Demographics and Characteristics of the Initial 6-month Cohort. 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
Natter MD, Winsor JR, Fox KA, Ilowite NT, Mandl KD, Mieszkalski KL, Sandborg CI, Sundy JS, Wallace CA, Schanberg LE, and CARRAnet Investigators Group.

Disease Characteristics and Medication Use in a Multicenter Cohort of Children with Juvenile Idiopathic Arthritis (JIA): Preliminary Analyses from the CARRAnet RegistryPediatr Rheumatol Online J. 2012; 10(Suppl 1): A46. Published online 2012 July 13. doi: 10.1186/1546-0096-10-S1-A46 PubMed Central PMC3403060
Ringold S, Beukelman T, Dewitt EM, Natter M, Nigrovic PA, Kimura Y, and CARRAnet Investigators.

An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc. 2012 Jun 25 PMID: 22733975
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.

Consensus treatments for moderate Juvenile Dermatomyositis: Beyond the first two months. Results of the second Childhood Arthritis and Rheumatology Research Alliance consensus conference. Arthritis Care & Research, Vol 64, No. 4, Apr 2012; pp 546-53. doi: 10.1002/acr.20695. PMID: 22076847
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.

Consensus treatment plans for induction therapy of newly diagnosed proliferative Lupus Nephritis in Juvenile Systemic Lupus Erythematosus. Arthritis Care & Research Vol. 64, No. 3, March 2012, pp 375–383. doi: 10.1002/acr.21558 © 2012, American College of Rheumatology PMID: 22162255
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.

Trial of early aggressive therapy in polyarticular juvenile idiopathic arthritis Arthritis Rheum. 2012 Jun; 64(6):2012-21. doi: 10.1002/art.34343. Epub 2011 Dec 19. PMID: 22183975
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.

Use of atorvastatin in systemic lupus erythematosus in children and adolescents. Arthritis Rheum.Vol. 64, No. 1 January 2012, pp 285-296 doi: 10.1002/art.30645. PMID: 22031171
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.


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.

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

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

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

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

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

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

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

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.

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 featuresArthritis Care & Research; Vol. 63, No. 4, April 2011, pp 465–482 doi: 10.1002/acr.20460. PMID: 21452260
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.

Initial evaluation of an ultrasound measure for assessing the activity of skin lesions in juvenile localized scleroderma. Arthritis Care Res (Hoboken). 2011 May;63(5):735-42. doi: 10.1002/acr.20407 PMID: 21557528 
Li SC, Liebling MS, Haines KA, Weiss JE, Prann A.

American College of Rheumatology provisional criteria for defining clinical inactive disease in select categories of juvenile idiopathic arthritis.
Arthritis Care & Research, Vol. 63, No. 7, July 2011, pp 929–936, doi: 10.1002/acr.20497. PMID: 21717596
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.

Extended report: Efficacy of intravenous IG therapy in juvenile dermatomyositis. Ann Rheum Dis 2011; 70:12 2089-2094. Published Online First: 6 October 2011. doi:10.1136/ard.2011.153718 Lam CG, Manlhiot C, Pullenayegum EM, Feldman BM


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 2012, 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 cohortLupus 2010 19: 1315; doi: 10.1177/0961203310373937. PMID: 2086120
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.

Protocols for the initial treatment of moderately severe juvenile dermatomyositis: results of CARRA Consensus Conference. Arthritis Care & Research, Vol. 62, No. 2, February 2010, pp 219-225 doi: 10.1002/acr.20071. PMID: 20191521
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.

Changes in the pattern of DNA methylation associate with twin discordance in systemic lupus erythematosusGenome Research. 2010 20: 170-179. PMID: 20028698
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.

Sonographic evaluation of pediatric localized scleroderma: preliminary disease assessment measuresPediatric Rheumatology, 2010  8:14 doi: 10.1186/1546-0096-8-14. PMID: 20423513
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.

Treatment of pediatric localized scleroderma: results of a survey of North American pediatric rhuematologistsThe Journal of Rhuematology 2010, 31:1, doi: 10.3899/jrheum.090708 PMID: 19918041
Li SC, Feldman BM, Higgins GC, Haines KA, Punaro MG, O’Neil KM.

Monitoring the long-term safety of therapies for children with juvenile idiopathic arthritis: time for a consolidated patient registryArthritis Care & Research, Vol. 62, NO. 6, June 2010, pp 800-804, doi: 10.1002/acr.20128 PMID: 20535790
Smith MY, Sobel RE, Wallace CA.

Anesthesia for intra-articular cortcosteriod injections in juvenile idiopathic arthritis: a survey of pediatric rheumatologistsPeditaric Rheumatology 2010, 8:3, doi: 10.1186/1546-0096-8-3. PMID: 20142994
Weiss JE, Uribe AG, Malleson PN, Kimura Y.

Articles

Classification, presentation and initial treatment of Wegner’s granulomatosis in childhood: an ARChiVe projectArthritis Rheumatism 2009; 60:3413-24. PMID: 19877069
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.

Premature atherosclerosis in pediatric systemic lupus erythematosus: risk factors for increased carotid intima-media thickness in the atherosclerosis prevention in pediatric lupus erythematosus cohortArthritis & Rheumatism, Vol. 60, No. 5, May 2009, pp 1496–1507 doi: 0.1002/art.24469. PMID: 19404953
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.

Articles

Ota S, Cron RQ, Schanberg LE, et al. Research priorities in pediatric rheumatology: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensusPediatric Rheumatology Online Journal. 2008;6:5. doi:10.1186/1546-0096-6-5.


Abstracts

Morishita K, et al. Evaluating the applicability of disease severity subclassifications in pediatric anti-neutrophil cytoplasm antibody (ANCA)-associated vasculitis: an ARChiVe study. Arthritis Rheum. 2008, 58 (9)S abst .F21. (Manuscript in preparation for submission at Annual Scientific ACR Meeting)

Articles

The future of rheumatology research: the Childhood Arthritis and Rheumatology Research Alliance
Curr Problems in Pediatric Adol Health Care. 2006; 36: 104-109
Sandborg, C.

Articles

Preliminary criteria for clinical remission for select categories of juvenile idiopathic arthritis (JIA). Journal of Rheumatology 2004; 31: 2290-4. PMID: 15517647 Wallace CA, Ruperto N, Giannini E; Childhood Arthritis and Rheumatology Research Alliance; Pediatric Rheumatology International Trials Organization; Pediatric Rheumatology Collaborative Study Group.

Dyslipoproteinemia and premature atherosclerosis in pediatric systemic lupus erythematosus. Curr Rheumatol Rep. 2004 Dec;6(6):425-33. PMID: 15527701 Schanberg LE, Sandborg C.


Abstracts

Outcomes of juvenile rheumatoid arthritis (JRA): changing treatment patterns and outcomes. Arthritis and Rheumatism 2005; 52: S81 Gottlieb, B., Sison, C., Higgins, G., Huber, A., Kimura, Y., Lovell, D. for The Long-Term JRA Outcome Study Group

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 (Abst. # 1486). O’Neil, K.M. and CARRA Investigators

Barriers in NIH-funded multicenter pediatric trials: Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) case study
Arthritis and Rheumatism 2005; 52: S537. Sandborg, C., Schanberg, L., McLendon, C.

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.  Arthritis Rheum.  50:9 Suppl. (Abst. # 1380). O’Neil KM, Participating CARRA Investigators

Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) trial design
Arthritis Rheum 50: S532, 2004. Schanberg, L., Sandborg, C., Allen, A., Riley, W., Provencale, J., McLendon, C.,  Li, J.

 

 

Research Spotlight

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.