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CARRA continues to lead the North American pediatric rheumatology research community


 

This year’s annual meeting of the Childhood Arthritis & Rheumatology Research Alliance (CARRA) saw a growing number of participants and new developments in collaborative research projects.

Dr. Marisa S. Klein-Gitelman is professor of pediatrics at Northwestern University, Chicago

Dr. Marisa S. Klein-Gitelman

The meeting occurred April 12-15 in Denver and had its highest-ever attendance with 489 participants, including 53 patients or parents (some traveling from Europe), 72 pediatric rheumatology fellows, and 20 sponsored pediatric residents.

CARRA continues to work in unison with the Arthritis Foundation, which has supported an intramural grant program, a pilot program to support registry sites, and a project to develop a clinically useful electronic dashboard to allow patients and clinicians to coproduce care and make treatment decisions. CARRA and the Arthritis Foundation support an externally-led Food and Drug Administration initiative called the Patient-Focused Drug Development program to bring patient voices into the arena of drug development. The Patient-Centered Outcomes Research Institute (PCORI) is also funding development of a patient-centered learning health system within the Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS).

Dr. Yukiko Kimura is chief of pediatric rheumatology at Joseph M. Sanzari Children's Hospital at Hackensack (N.J.) University Medical Center.

Dr. Yukiko Kimura

To date, CARRA has enrolled more than 5,000 patients into its registry, which is being used for a variety of research efforts, including phase 4 postmarketing studies, a PCORI-funded clinical trial to prevent extension of oligoarticular juvenile idiopathic arthritis (JIA) using a short course of abatacept, and large-scale comparative effectiveness studies for polyarticular and systemic JIA. CARRA looks to develop more comparative effectiveness studies, improve patient engagement and participation in research studies, establish a CARRA biorepository, and emphasize programs to develop and support early investigator careers.

The meeting featured premeetings for patients and parents, fellows, the CARRA registry, and a research basics course. During the meeting, 81 abstracts based on work supported by CARRA were presented and were published in Pediatric Rheumatology (Pediatr Rheumatol. 2018;16[Suppl 1]:42. doi: 10.1186/s12969-018-0252-y). There were 57 workgroup/committee meetings with parents and patients, providing input on the research agenda. This included workgroups addressing juvenile dermatomyositis, JIA, pain, systemic lupus erythematosus, scleroderma, vasculitis, and autoinflammatory and rare diseases. There were also meetings for small centers, translational research, transition to adult care, and early investigators.

The next meeting will be held in Louisville, Ky., April 10-14, 2019.

Dr. Klein-Gitelman is professor of pediatrics at Northwestern University, Chicago, and is a pediatric rheumatologist at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Dr. Kimura is past president of CARRA and is chief of pediatric rheumatology at the Joseph M. Sanzari Children’s Hospital at Hackensack (N.J.) University Medical Center.

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