Research & Registry

2014

Articles

Abstracts

  • A Pilot Study to Evaluate the Feasibility of Conducting Juvenile Localized Scleroderma Comparative Effectiveness Treatment Studies. Suzanne C. Li, Kathryn S. Torok, Mara L Becker Fatma Dedeoglu, Polly J. Ferguson, Robert C. Fuhlbrigge Gloria C. Higgins, Sandy D. Hong, Maria F. Ibarra, Ronald Laxer, Thomas G. Mason II, Elena Pope, Marilynn G. Punaro, C. Egla Rabinovich, Katie G. Stewart and Brian Feldman, Pediatrics, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, Rheumatology, Children’s Mercy Hospital, Kansas City, MO, Clinical Pharmacology and Rheumatology, Children’s Mercy Hospital, Kansas City, MO, Rheumatology, Boston Children’s Hospital, Boston, MA, Dept of Pediatrics–Rheum, University of Iowa Carver College of Medicine, Iowa City, IA, Department of Dermatology, Brigham and Women’s Hospital, Boston, MA, Division of Immunology, Boston Children’s Hospital, Boston, MA, Pediatric Rheumatology Ohio State University, Nationwide Childrens Hosp, Columbus, OH, Pediatrics-Rheumatology, U of Iowa Children’s Hosp, Iowa City, IA, Pediatric Rheumatolgy, Children’s Mercy Hospital, Kansas City, MO, Rheumatology, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada, Rheumatology, Mayo Clinic Rochester, Rochester, MN, Dermatology, The Hospital for Sick Children, Toronto, ON, Canada, Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, Pediatric Rheumatology, Duke Univ Med Ctr, Durham, NC, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada.
     
  • Towards Reliable Implementation and Optimal Use of Medication Decision Aid Cards for Shared Decision Making in Juvenile Idiopathic Arthritis. Esi M. Morgan DeWitt, Janalee Taylor, Karla B. Jones, Murray H. Passo, Catherine C. Mims, Jesse Pratt, Ellen A. Lipstein, Nancy Griffin, Sheetal S. Vora, Beth S. Gottlieb, Elizabeth Roth-Wojcicki and William B. Brinkman, Department of Pediatrics, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, William S. Rowe Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Rheumatology ED S, Nationwide Children’s Hospital, Columbus, OH,Pediatric Rheumatology, Medical University of South Carolina, Charleston, SC,Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Division of Adolescent Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, University of North Carolina Chapel Hill, Chapel Hill, NC,Pediatric Rheumatology, Cohen Children’s Medical Center of New York, New Hyde Park, NY, Pediatrics, Medical College of Wisconsin, Milwaukee, WI, Division of General and Community Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. 2014
     
  • Symptom and Treatment Characteristics of Juvenile Primary Fibromyalgia Syndrome: Are Males and Females Created Equal. Jennifer E. Weiss, Kenneth Schikler, Alexis Boneparth, Cara Hoffart and Mark Connelly. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium March 2014 Volume 66, Issue Supplement S3, page S134
     
  • Process Outcomes and Community-Wide Efficacy of the Amigo Inter-Institutional Mentoring Initiative within Pediatric Rheumatology. Lakshmi N. Moorthy, Eyal Muscal, Meredith P. Riebschleger, Kelly A. Rouster-Stevens, Polly J. Ferguson, Rayfel Schneider, Marisa Klein-Gitelman, Hermine I. Brunner, Anna Huttenlocher and Peter A. Nigrovic, Pediatric Rheumatology, Robert Wood Johnson Medical School-Rutgers University, New Brunswick, NJ, Rheumatology, Texas Children’s Hospital, Houston, TX, Pediatric Rheumatology & Health Services Research, University of Michigan, Ann Arbor, MI, Pediatrics, Emory University School of Medicine, Atlanta, GA, Dept of Pediatrics–Rheum, University of Iowa Carver College of Medicine, Iowa City, IA, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, Anne & Robert H Lurie Childrens Hospital of Chicago, Chicago, IL, PRCSG, Cincinnati, OH, Dept of Pediatrics and MMI, Univ of Wisconsin Schl of Med, Madison, WI,Brigham and Women’s Hospital/Harvard University, Cambridge, MA.. 2014
     
  • Oral Presentation: Regulatory Variants of the MHC, and a Regulatory Region Near an Intergenic Long Noncoding RNA on Chromosome 1 Are Risk Factors for Systemic Juvenile Idiopathic Arthritis. Michael J. Ombrello, Elaine F. Remmers, Ioanna Tachmazidou, Alexei Grom, Dirk Föll, Alberto Martini, Marco Gattorno, Seza Ozen, Sampath Prahalad Andrew S. Zeft, John F. Bohnsack, Norman T. Ilowite, Jane L. Park, Elizabeth D. Mellins, Ricardo A. G. Russo, Claudio A. Len, Sheila K. Feitosa de Oliveira, Rae SM Yeung, Lucy R. Wedderburn Jordi Anton, Tobias Schwarz, Buhm Han, Richard H. Duerr, Jean-Paul Achkar, M. Ilyas Kamboh, Kenneth M. Kaufman, Leah C. Kottyan, Dalila Pinto, Stephen Scherer, Marta E. Alarcón-Riquelme, Elisa Docampo Martinez, Xavier Estivill, Ahmet Gul, Colleen Satorius, Paul I.W. de Bakker , Soumya Raychaudhuri , Carl D. Langefeld, Susan D. Thompson, Eleftheria Zeggini, Wendy Thomson, Daniel L. Kastner, Patricia Woo and International Childhood Arthritis Genetics (INCHARGE) Consortium, Translational Genetics and Genomics Unit, National Institute of Arthritis Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD, Inflammatory Disease Section, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, The Wellcome Trust Sanger Institute, Cambridge, United Kingdom, Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric Rheumatology and Immunology, University Children’s Hospital Muenster, Muenster, Germany, University of Genova, Genova, Italy, Pediatric Rheumatology, Instituto Giannina Gaslini, Genoa, Italy, Deptartment. of Pediatric Rheumatology, Hacettepe University, Ankara, Turkey, Emory University School of Medicine, Atlanta, GA, Children’s Healthcare of Atlanta, Atlanta, GA, Pediatrics Rheumatology, Cleveland Clinic, Cleveland, OH, Pediatriacs, University of Utah, Salt Lake City, UT, Pediatrics, Albert Einstein College of Medicine, Bronx, NY, Pediatric Rheumatology, Stanford University Medical Center, Stanford, CA, Dept of Pediatrics CCSR, Stanford University Medical Center, Stanford, CA, Immunology & Rheumatology, Hospital de Pediatria Garrahan, Buenos Aires, Argentina, Universidade Federal de São Paulo/Escola Paulista de Medicina, São Paulo, Brazil, Pediatric Rheumatology, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil, Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, University College London (UCL) Institute of Child Health, London, United Kingdom, Great Ormond Street Hospital, London, United Kingdom, Pediatric Rheumatology Unit. Hospital Sant Joan de Déu. Universitat de Barcelona, Barcelona, Spain, Pediatric rheumathology and osteology, University of Wuerzburg, Wuerzburg, Germany, Program in Medical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, Department of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh, Pittsburgh, PA, Gastroenterology and Hepatology, Cleveland Clinic, Cleveland, OH, Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA, Center for Autoimmune Genomics and Etiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Genetics and Genomi Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, The Centre for Applied Genomics, The Hospital for Sick Children, Toronto, ON, Canada, Arthritis and Clinical Immunology Program, Oklahoma Medical Research Foundation, Oklahoma City, OK, Unit of Animal Genomics, GIGA-Université de Liège, LIege, Belgium, Genetic Causes of Disease Laboratory, Center for Genomic Regulation, Barcelona, Spain, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey, National Human Genome Research Institute, Bethesda, MD, Brighan and Women’s Hospital, Harvard Medical School, Boston, MA, Broad Institute of MIT and Harvard, Cambridge, MA, University Medical Center Utrecht, Utrecht, Netherlands, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, Manchester Academic Health Sciences Centre, Manchester, United Kingdom, Center for Public Health Genomics and Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, Division and Center for Autoimmune Disease Genomics and Etiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Inflammatory Disease Section, National Human Genome Research Institute, Bethesda, MD, Paediatric Rheumatology Unit, University College London, London, United Kingdom. 2014
     
  • Analysis of Risk Factors for Thrombosis in Pediatric Patients with Systemic Lupus Erythematosus. Kyla D. Driest, Mollie S. Sturm, Sarah H. O’Brien, Charles H. Spencer and Stacy P. Ardoin, Rheumatology, OSU Pediatrics, Nationwide Children’s Hospital, Columbus, OH,Nationwide Children’s Hospital, Columbus, OH, Hematology, Nationwide Children’s Hospital, Columbus, OH, Rheumatology, Nationwide Childrens Hospital, Columbus, OH,Pediatric & Adult Rheumatology, Ohio State University College of Medicine, Columbus, OH.
     
  • Changes over time in symptoms and treatment of juvenile primary fibromyalgia syndrome. Mark Connelly, Cara Hoffart, Kenneth Schikler, Alexis Boneparth andJennifer E. Weiss. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium 2014 Volume 66, Issue Supplement S3, page S117
     
  • Comorbidity Patterns in Children with Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus: The Childhood Arthritis and Rheumatology Research Alliance Registry. Marc D. Natter, Mei-Sing Ong, Kenneth D. Mandl, Laura Schanberg, Yukiko Kimura, Norman Ilowite and the CARRA Registry Investigators, Intelligent Health Labs, Children’s Hospital Boston, Boston, MA, Australian Institute of Health Innovation, University of New South Wales, Sydney, Australia, Intelligent Health Lab, Children’s Hospital Boston, Boston, MA, Duke University, Durham, NC, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Rheumatology, Children’s Hospital Montefiore, Bronx, NY. 2014
     
  • Demographic, Clinical and Treatment Characteristics of the Childhood Arthritis and Rheumatology Research Alliance Registry Systemic JIA Cohort. Ginger L. Janow, Laura Schanberg, Soko Setoguchi, Elizabeth D. Mellins, Rayfel Schneider, Yukiko Kimura, and The CARRA Registry Investigators, Pediatric Rheumatology, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Duke University, Durham, NC, Duke Clinical Research Institute, Durham, NC, Dept of Pediatrics CCSR, Stanford University Medical Center, Stanford, CA,Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Childhood Arthritis and Rheumatology Research Alliance, Durham, NC. 2014
     
  • Familial Autoimmunity in the CARRA Registry. Sampath Prahalad, Courtney McCracken, Lori Ponder, Sheila T. Angeles-Han, Kelly Rouster Stevens, Larry B. Vogler, Carl D. Langefeld, Susan D. Thompson, and The CARRA Registry Investigators. Arthritis and Rheumatology 2014 Vol. 66, No. S3, March, p S157
     
  • Increasing Rates of Remission in Juvenile Idiopathic Arthritis through a Quality Improvement Learning Network – ­the Pediatric Rheumatology Care and Outcomes Improvement Network. Esi M. Morgan DeWitt, Stacy P. Ardoin, C. April Bingham, Beth S. Gottlieb, Ronald Laxer, Nancy Griffin, Jesse Pratt, Anne Paul, Daniel Lovell, Judyann C. Olson, Murray H. Passo, Jennifer E. Weiss, Tzielan C. Lee, Sheetal S. Vora, Melissa M. Hazen and Peter Margolis, Department of Pediatrics, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Pediatric & Adult Rheumatology, Ohio State University College of Medicine, Columbus, OH, Penn State Hershey Children’s Hospital, Hershey, PA, Pediatric Rheumatology, Cohen Children’s Medical Center of New York, New Hyde Park, NY, Rheumatology, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada, James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH,Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH,Division of Rheumatology, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati, Cincinnati, OH, Medical College of Wisconsin, Milwaukee, WI, Pediatric Rheumatology, Medical University of South Carolina, Charleston, SC, Pediatric Rheumatology, Joseph M Sanzari Children’s Hospital, Hackensack University Medical Center, Hackensack, NJ, Pediatric Rheumatology, Stanford University School of Medicine, Stanford, CA, University of North Carolina Chapel Hill, Chapel Hill, NC, Division of Immunology, Boston Children’s Hospital, Boston, MA, Clinical Effectiveness, Cincinnati Children’s Hospital, Cincinnati, OH. 2014
     
  • Insufficient CARRA Registry Data Available to Adequately Evaluate for Associations Between Juvenile Idiopathic Arthritis, Antibody Status, and Smoke Exposure. Nora G. Singer, Steven Lewis, Douglas Gunzler, Stephanie Kanuch andAndrew S. Zeft. Arthritis & Rheumatology Special Issue: Abstracts from the 2014 Pediatric Rheumatology Symposium March 2014 Volume 66, Issue Supplement S3, page S145
     
  • Medication use in the treatment of juvenile idiopathic uveitis patients enrolled in the childhood arthritis and rheumatology research alliance registry. Lauren A. Henderson, David Zurakowski, Sheila Angeles-Han, Andrew Lasky, C. Egla Rabinovich andMindy S. Lo. Arthritis & Rheumatology. American College of Rheumatology March 2014 Vol. 66, No. S3, p S102DOI 10.1002/art.38486©
     
  • Preliminary Results from the Childhood Arthritis and Rheumatology Research Alliance Systemic JIA Consensus Treatment Plans Pilot Study. Y Kimura, EM DeWitt, K Mieszkalski, T Beukelman, TB Graham, M Ibarra, N Ilowite, M Klein-Gitelman, K Onel,S Prahalad, M Punaro, S Ringold, D Toib, H Van Mater, P Weiss, LE Schanberg for the CARRA Registry Investigators. 2014
     
  • Studying Patients with Autoinflammatory Diseases: The Past, Present, and a Perspective for the Future. Jonathan S. Hausmann, Catherine Biggs, Donald P. Goldsmith and Fatma Dedeoglu, Rheumatology, Boston Children’s Hospital, Boston, MA, Rheumatology, Beth Israel Deaconess Medical Center, Boston, MA, Program in Rheumatology, Divison of Immunoloty, Boston Children’s Hospital, Boston, MA, Pediatric Rheumaology, St Christopher’s Hospital for Children/ Drexel College of Medicine, Philadelphia, PA, on behalf of CARRAnet Investigators, Palo Alto, CA. 2014
     
  • The Presentation and Initial Treatment of Systemic Juvenile Idiopathic Arthritis According to Observational Data from the United States and the United Kingdom. Timothy Beukelman, Roberto Carrasco, Yukiko Kimura, Laura Schanberg, Wendy Thomson, Kimme L. Hyrich, For the CARRA Registry Investigators and For the CAPS Investigators Group, Pediatric Rheumatology, University of Alabama at Birmingham, Birmingham, AL, Centre for Musculoskeletal Research, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Pediatric Rheumatology, Hackensack Univ Medical Ctr, Hackensack, NJ, Duke University, Durham, NC, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, Centre for Musculoskeletal Research, University of Manchester, Manchester, United Kingdom, CARRA, Durham, NC, CAPS, Manchester, United Kingdom.
     
  • U.S. Geographic Trends in the Distribution and Treatment Practices of Juvenile Systemic Lupus Erythematosus: An Analysis of the Childhood Arthritis and Rheumatology Research Alliance Registry. Jennifer M.P. Woo, MPH, Ornella Rullo, MD, Deborah McCurdy, MD, for the CARRA Registry Investigators. 2014