Grant Promotes Access to Health Studies for People with IDD

Oct. 3, 2022
A young adult wearing a pink shirt sitting and speaking with a blonde woman in a wheelchair.

The Sonoran Center for Excellence in Disabilities (Sonoran Center) received a two-year, $250,000 grant from the Patient-Centered Outcomes Research Institute (PCORI)(link is external) to promote equitable access to health-related research projects that are important for people with intellectual and developmental disabilities (IDD). We are particularly excited for this new collaborative initiative as the PCORI mission, advocating for the patient’s voice, is closely aligned with missions of the Department of Family & Community Medicine and the Sonoran Center.

The project is led by Yumi Shirai, PhD, assistant professor, and co-leader Julie Armin, PhD, assistant professor. Other team members are Lynne Tomasa, PhD, MSW, assistant professor; Tamsen Bassford, MD, associate professor; and Jamie Edgin, PhD, associate professor.
“Our primary objective is to collaborate with six individuals with IDD and their family members, as the core project team members to develop a depository with educational and research resources and tools that facilitate inclusion of people with IDD for researchers and institutional review board (IRB) staff to conduct inclusive research,” said Dr. Shirai.
People with 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.
The project team will:

  • Identify key areas of health-related research that are important to people with IDD 
  • Identify gaps, barriers and needs among people with IDD, academic health researchers, IRB staff, and IDD professionals, to facilitate research participation
  • Develop and adapt practical educational/research resources and tools for researchers and institutional staff to facilitate inclusion of people with IDD in research
  • Develop a web-based depository and a guidebook for researchers and IRB staff

“The key to success is involving individuals with IDD and their family members as experts, guiding the team throughout the process. We will also engage the broader IDD community, IDD professionals, health researchers and institutional stakeholders involved in exploring practical ways to facilitate inclusive research,” said Dr. Shirai.