Linking contextual information to common data elements for FAIR myositis research

Authors

• MA Diller
• LG Rider
• RH Scheuermann

Abstract

Both the National Institute of Health (NIH) Strategic Plan for Data Science and the National Library of Medicine (NLM) Strategic Plan 2017-2027 specify the use of standards to promote interoperability in adherence with the FAIR principles for data stewardship. Among the standards mentioned are common data elements (CDE), which are standardized pairs of questions and allowed responses that are intended to be reused across multiple studies. To facilitate the development and use of CDEs, the NLM, in 2015, developed the NIH CDE Repository, which as of July 2024 contains over 22,000 CDEs that are used across multiple NIH centers. Concurrently, Congress has directed increased funding to support innovative, data-driven research on autoimmune disease and identified CDEs as a key tool to facilitate this. Unfortunately, NIH CDEs specific to the instruments or assessments used for myositis research have not yet been developed. Therefore, to address this pressing need, we are developing collections of CDEs based on myositis study forms and instruments developed by the International Myositis Assessment and Clinical Studies Group (IMACS)—a consortium of international researchers who have developed standardized assessments and clinical trial designs for the myositis research community. To further improve the reusability of these CDEs, we are developing data representation design patterns (bundles) to link the CDEs with important contextual information related to when and how the information is captured. Lastly, we are mapping these CDEs and their linked contextual information to well-formulated reference ontologies to promote machine-readability, CDE findability, and knowledge inferencing.

Scientific Focus Area: Clinical Research

This page was last updated on Tuesday, August 6, 2024