May 31, 2023

Intellectual and Developmental Disabilities Data Report

This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. 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.

Access the IDD Data Report.

Access the related PCORI IDD Workgroup report on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on IDD.