A Roadmap for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet®
Our findings provide insight into the current gaps in knowledge of IDD clinical care, the use of the PCORnet infrastructure to improve cohort ascertainment for IDD CER, and opportunities to enhance the PCORnet® Common Data Model (CDM) to standardize additional patient-centered and IDD-focused data elements for future CER.
Authors
- Michelle Franklin (ORCID: https://orcid.org/0000-0002-0584-1947)
- Scott M. Myers (ORCID: https://orcid.org/0000-0001-7614-6338)
- Sarah E. Gobuty
- Elijah Thomas
- Rowena J. Dolor
- Susan Wiley
- Gary R. Maslow
- Ana Quiñones
- Jessica M. Kramer
- Hoangmai (Mai) H. Pham
- Steph Hendren
- Joaquin Bello
- Briana Thompson
- Kerri Nowell
Institutions
- Cincinnati Children's Hospital Medical Center (US)
- NewYork–Presbyterian Hospital (US)
- Oregon Health & Science University (US)
- Duke University (US)
- University of California, San Francisco (US)
- Cornell University (US)
- Center for Child and Family Health (US)
- Santa Fe College (US)
- University of Florida (US)
- Advocate Health Care (US)
- Presbyterian Hospital (US)
- Community Care (US)
- Community Care Partners (US)
- Duke Medical Center (US)
- Duke University Hospital (US)
- Geisinger Health System (US)
- University of Cincinnati (US)
- Center for Autism and Related Disorders (US)
Publication Details
- Journal
- Medical Care
- Published
- 2026-01-08
- DOI
- https://doi.org/10.1097/mlr.0000000000002259
- Citations
- 1
- Primary Topic
- Down syndrome and intellectual disability research
- Type
- article
- Field-Weighted Citation Impact
- 41.85
Funders
- Patient-Centered Outcomes Research Institute
- University of Pittsburgh