This report describes the results of a data query of the patients with IDD conditions with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2025. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.
View the Interactive Population Insights for Intellectual and Developmental Disabilities.
Download the IDD Population Insights Report (PDF).
ARCHIVE: October 2019-October 2022, with 10-year lookback IDD Data Report
Related material: Access the related PCORI IDD Workgroup report on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on IDD.