A Roadmap for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet®

This project sought to (1) identify critical gaps in knowledge of intellectual/developmental disabilities (IDD) clinical care and accelerate research by identifying a set of high-priority patient-centered comparative clinical effectiveness research (CER) questions that may be answered using PCORnet and (2) provide recommendations to advance CER for people with IDD (PwIDD).

National-scale research is needed to better identify PwIDD, determine appropriate interventions, and evaluate care quality throughout individuals' life course to improve health outcomes and address health inequities.

PCORnet® Network Partners convened Workgroup members who: (1) provided input on research gaps based on their research, clinical work, and/or lived experiences, (2) conducted a literature scan, (3) examined the current capabilities through a data query of PCORnet data resources, (4) surveyed PCORnet® partner sites to describe current infrastructure, (5) identified gaps in knowledge, (6) prioritized unanswered patient-centered CER questions, and (7) characterized infrastructure needs to address CER questions.

Sites participating in PCORnet® collectively serve many individuals across the range of IDD conditions, including more than 300,000 individuals with diagnosed autism. There is high utilization of the emergency department (19%-35%) and inpatient setting (8%-31%) across IDD conditions. We identified 3 broad evidence gaps and generated CER questions to address them.

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.