PCORI: Building capacity to include people with IDD in health-related research
Project Description:
People with intellectual and developmental disabilities (IDD) 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 equitable access to health-related research projects that are important for people with IDD, 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.
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.
Expected Outcomes:
1) Identify key areas of health-related research that are important to people with IDD and the IDD community
2) Identify gaps, barriers, and needs among people with IDD, academic health researchers, IRB staff, and IDD professionals to facilitate research participation, including participation in PCOR/clinical comparative effectiveness research (CER)
3) Develop and adapt practical and feasible educational and research resources and tools for researchers and institutional staff to facilitate inclusion of people with IDD in health-related research, including PCOR/CER
4) Develop a web-based depository and a guidebook for researchers and IRB staff
Keyword(s):
inclusion, research, health
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Health-Related Activities
Target Audience:
Students/Trainees (long or intermediate trainees), Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities
Unserved or Under-served Populations:
Specific Groups
Primary Target Audience Geographic Descriptor:
State, National
COVID-19 Related Data:
N/A
