The Rise of Big Data Registries in Rheumatology – Part 2

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In part 1 of this series, experts provided insight into a few data registries in rheumatology, including ArthritisPower, CorEvitas, and the American College of Rheumatology (ACR)’s RISE registry.

In the second part, we’re discussing 2 more data registries in rheumatology. Yukiko Kimura, MD, provides an overview of the updates and future plans of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry for pediatric rheumatology; and Pedro Machado, MD, PhD, describes the engaging data and work stemming from the COVID-19 Global Rheumatology Alliance.

Read the full transcript for this episode here.

Yukiko Kimura, MD, is the chief of the Pediatric Rheumatology Division at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, New Jersey, and professor of pediatrics at the Hackensack Meridian School of Medicine.

Dr Kimura has been a leader of the CARRA and is currently the co-chair of the CARRA Registry and Research Oversight Committee (RROC). She is also co-principal investigator of the CARRA Registry for pediatric rheumatic diseases, which has now enrolled more than 11,000 patients across North America. One major purposes of the CARRA registry is to identify and track potential long-term serious adverse events and safety signals in children with rheumatic diseases.

As the chair of the juvenile idiopathic arthritis (JIA) Disease Research Committee, Dr Kimura led the development of the consensus treatment plans for systemic and polyarticular JIA, and she is the principal investigator of 2 CARRA registry-wide multicenter studies testing the comparative effectiveness of CARRA CTPs for children and adolescents with polyarticular JIA (STOP-JIA) and systemic JIA (FROST).

Pedro Machado, MD, PhD, FRCP, is an associate professor and consultant rheumatologist at University College London (UCL) and University College London Hospitals (UCLH). Dr Machado’s research interests include the investigation of new therapeutic strategies and the assessment and prediction of outcomes in rheumatic diseases, with a focus on axial spondyloarthritis and myositis. More recently, he has also developed an interest in COVID-19, particularly the outcomes of COVID-19 in patients with rheumatic diseases and the use of immunomodulators in the treatment of COVID-19.

Dr Machado has published more than 150 peer-reviewed articles and he is the past-chair of the EULAR Standing Committee of Epidemiology and Health Services Research. He is also a member of the COVID-19 Global Rheumatology Alliance (GRA) steering committee and the chair of the European Alliance of Associations for Rheumatology (EULAR) COVID-19 Registry steering group.