Report

Intellectual and Developmental Disabilities Data Report

Posted on by Jodi Snare

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.

Access the IDD Population Insights Report

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.

Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet Practices

Posted on by Jodi Snare

This report examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.

Access the scan of PCORnet practices here.