The COVID-19 Global Rheumatology Alliance (RHEUM-COVID) has started a registry for improving surveillance of SARS-COV-2 and COVID-19 in individuals with rheumatic conditions. The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is an official supporter of this effort and has sponsored a pediatric-specific data collection effort, the COVID-19 Pediatric Rheumatology Database, for reporting of all cases of SARS-CoV-2 and/or COVID-19 in individuals with any type of pediatric rheumatic diseases who are under 19 years old, including those with inflammatory brain diseases and primary autoimmune eye disease. This study has been approved by the Boston Children's Hospital IRB. More information about this study is available here.
As part of this effort, we are making our case report forms and data dictionary, which were developed by the Boston Children's Hospital investigators in collaboration with CARRA, RHEUM-COVID, and the EULAR/PReS COVID-19 database, available publicly under a Creative Commons Attribution Share Alike license.
Please email us with any questions.
The CARRA COVID-19 Pediatric Rheumatology Database is built by the Registry Informatics R&D Group at the Computational Health Informatics Program, Boston Children's Hospital
Marc Natter, Min-Lee Chang, Meg Waite, Chris Gentle