People with intellectual and developmental disabilities (IDD) like autism have a higher prevalence of chronic health conditions, such as diabetes and psychiatric disorders, compared to the general population. However, they are underrepresented in health-related research and national data. To promote inclusive research practices for people with IDD, the project team will engage the IDD community, IDD professionals, health-focused researchers, and institutional stakeholders who are involved in a research process to explore feasible and practical ways to increase capacity and facilitate inclusive research. The project’s goal is to improve readiness for researchers and institutional review board (IRB) staff to conduct inclusive research practice with people with IDD in their health-related projects.
The primary objective is to develop a depository with patient-centered outcomes research (PCOR)-related educational and research-related resources and tools that facilitate inclusion of people with IDD.