The Patient-Centered Outcomes Research Institute (PCORI) will release several patient-centered comparative clinical effectiveness research (CER) funding opportunities on January 9, inviting research teams to utilize the PCORnet infrastructure and resources to support both interventional and observational research addressing health issues faced by large populations in the United States.
A new report from a multidisciplinary workgroup, including patients and caregiver partners, focused on intellectual and developmental disabilities (IDD), provides insight into critical research gaps and needs in IDD as well as prioritize unanswered patient-centered CER questions which may be addressed using PCORnet. The workgroup also developed recommendations for enhancements and preparatory activities for future patient-centered CER on IDD by which the PCORnet infrastructure may be leveraged.
Intellectual and Developmental Disabilities
The IDD Workgroup identified numerous CER questions spanning both general healthcare topics and specific conditions meaningful to individuals within this patient population, that can be studied using PCORnet. In addition to these potential opportunities for national-scale PCORnet® Studies, further topics and opportunities to use the network for priority questions are possible with scalable data enhancements across PCORnet. To advance patient-centered CER for individuals with IDD, the Workgroup outlined steps in which sites and investigators within PCORnet® Clinical Research Networks can help promote health equity by potentially examining evidence-based interventions for common chronic diseases that have not previously been studied in IDD populations and help ensure individuals with IDD that have been historically invisible to the health care system are visible.
The data query of electronic health records (EHR) that informed this report is the largest known, national-scale descriptive analysis of IDD populations using EHR data. The query was conducted for a broad range of eleven IDD-related condition groups. The data reveals the IDD population served by these CRN sites includes 300,000 individuals with autism and more than one million patients with Attention Deficit Hyperactivity Disorder, known as ADHD. The query report also highlights unequitable access to healthcare. Individuals with an IDD diagnosis often receive care in an emergency location. The analysis also highlights common comorbidities that include diabetes, hypertension, and seizure disorders. The Workgroup noted a lack of high-quality CER studies on diabetes and hypertension within this population, underscoring the potential of PCORnet resources for IDD researchers. Read the full report.
Interested in harnessing insights on these topics and others for CER studies? The application period for PCORI’s Funding Announcement begins on January 9.