Meet a pediatric rheumatologist who helped pioneer collaborative research in pediatric rheumatic and related autoimmune diseases.

Dr. Yukiko Kimura helped create a collaborative research network called the Childhood Arthritis and Rheumatology Research Alliance (CARRA) with a small group of dedicated physicians working in pediatric rheumatology. From the very beginning, they partnered with patients and families at every stage of research.

Learn about the growth of this pediatric rheumatology research organization and what the future holds for CARRA, as the organization continues to accelerate research and drive advances in evidence-based medicine, while also creating career development opportunities for pediatric rheumatologists.

In this first episode of The CARRA Podcast, Claudette Johnson sits down with Dr. Kimura to learn more about how CARRA has been a trailblazer in patient-centered research, while also supporting the field of pediatric rheumatology. Dr. Kimura is the division chief of pediatric rheumatology at Hackensack Meridian Health in New Jersey.

Dr. Kimura explains how pediatric rheumatology was very different back in the late 1990s when she finished her fellowship in pediatric rheumatology than it is today. At the time, less than half of pediatric rheumatology patients were being cared for by a pediatric rheumatologist. More than a third of medical schools in the United States, didn't have even one pediatric rheumatologist on their faculty, and less than 10 fellows a year were graduating across the entire United States.

It was very challenging to do research because there simply weren’t enough pediatric rheumatologists.

A big reason for starting CARRA was that pediatric rheumatologists had a lot of questions about pediatric rheumatic diseases and how to achieve the best outcomes for their patients.

Pediatric rheumatologists around the country realized that there were so many questions to be answered, but they had no way to answer them. They realized that they needed to come together as a group and collaborate with each other to be able to do research.

Thus, CARRA was born with the mission to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases and related autoimmune diseases.

From humble beginnings in 2002, CARRA has grown into an extensive collaborative research network with 600 members at more than 120 institutions. CARRA has built the largest observational multi-center Registry for pediatric rheumatic disease, which has over 13,000 patients. CARRA also operates two biobanks.

CARRA members also work with other pediatric rheumatology organizations and research organizations internationally.

CARRA has a research project called SMART-JIA, which was just funded by PCORI (Patient-Centered Outcomes Research Institute), to conduct international research. In addition to sites within CARRA, the study will involve collaborating with the Pediatric Rheumatology European Society (PReS) and PRINTO (Pediatric Rheumatology International Trials Organization) to enroll patients from all over the world.

Dr. Kimura emphasizes that CARRA really has brought to the forefront the importance of engaging patients and their families in research. That has become embedded within CARRA, and Dr. Kimura explains that they need patients and families to guide them towards the questions that matter to patients because that is the point research — to improve the lives of patients.

Learn how physicians can join CARRA and how patients/family members can get involved with CARRA.