Development of a Pediatric Rheumatology Common Data Element set (CDE) for Juvenile Idiopathic Arthritis

PROJECT SUMMARY This conference and associated consensus process will create a bundle of NIH-endorsable consensus Common Data Elements (CDE) specifically targeted to advance research efforts according to FAIR principles in Juvenile Idiopathic Arthritis (JIA), the most prevalent pediatric rheumatic disease (PRD), for which no current effort to create a CDE exist or is in-process. Creation of consensus-driven CDEs for JIA will facilitate study of this and other PRDs diseases across research projects in pediatric rheumatic diseases and other autoimmune diseases, furthering the scope and generalizability of research in rheumatic diseases across the lifetime. The JIA disease domain appears readily amenable to the processes needed for consensus CDEs to be formally defined, mapped to existing data elements from major existing efforts, and submitted in a format that will enable endorsement by the PRD community and NIH. We therefore propose a consensus driven process to enable a final product of an NIH-endorsable CDE for JIA, with the aims of (1) expert identification and collation of existing data elements, including from major existing research efforts; (2) a virtual conference for JIA CDE consensus development, conducted using modified Delphi methodology that has been successfully utilized for generation of multiple consensus efforts in the past; and (3) creation of NIH-endorsable bundles of consensus- based CDEs for JIA. As a final product, we will collate and compile responses from the respective consensus conference meetings into a JIA CDE bundle. This will be prepared in both text-based, human readable format and machine-interpretable formats (e.g. data dictionaries, code lists), with inclusion of metadata and conversion to formats suitable for inclusion in the NIH CDE repository.