Intellectual and Developmental Disabilities Data Report

Posted on August 19, 2026September 21, 2026 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.

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

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

Posted on May 20, 2021November 9, 2023 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.

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