Access for Intellectually and/or Developmentally Disabled People to Health-Related Research Projects

pcori logo depicting drawings of four people in a circle surrounded by the project's title

AIDD2Health: Access for Intellectually and/or Developmentally Disabled People to Health-Related Research Projects

About the Project

Our mission is to support health-related research that addresses what intellectually and/or developmentally disabled people want for healthy living. This includes physical and mental health, direct services, policy development, education, and other issues related to health and community living. We want to support research that is accessible, inclusive and ethical.

We are self-advocates, supporters, and researchers in Arizona. We are working to develop strategies, tools, and models that others around the U.S. can use.  These strategies, tools, and models use universal design for learning principles. 

We  want to make sure that intellectually and/or developmentally disabled (I/DD) people are included in all  areas of health research. Inclusion  will help people with I/DD have fair access to good health and community living.  This means disabled people and their supporters will get help from: 

  • Fair policies
  • Ethical practices 
  • Accessible information
  • Culturally responsive approaches. 

Objectives

  1. Make sure that people with IDD can access health-related research projects that are important to them.
  2. Teach researchers and the IRB/University about IDD-inclusive research practices and how to use them in health-related projects.
  3. Create a library  of resources and tools that promote inclusion of people with IDD in research.

“The key to success is involving individuals with IDD and their family members as experts, guiding the team throughout the process, and we’ll engage the broader IDD community, IDD professionals, health researchers and institutional stakeholders to explore practical ways to facilitate inclusive research.”  - Yumi Shirai

 

 

Why is Building Capacity in Health-Related Research to Include People with IDD important?

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 projects that are important for people with IDD, the Sonoran Center for Excellence in Disabilities received a two-year, $250,000 grant from the Patient-Centered Outcomes Research Institute (PCORI). https://www.pcori.org/ 

 

Project Core Team:

PCORI team members Zoom meeting screenshot

 

Project Lead,  Co-Lead and Program Coordinator: 

  • Yumi Shirai, PhD
  • Julie Armin, PhD
  • Linda Nazifi

Project Core Team:

  • Claire Adams
  • Michael Sanderfer
  • Madison Harper
  • Susie Turrey
  • Jack McHugh
  • Sarah Worthington

Sonoran University Center for Excellence in Disabilities –
Staff, Faculty & Students:

PCORI Sonoran Center team members Zoom meeting screenshot

 

  • Lizzy Jeffrey-Franco, MPH
  • Anne Catherine Lednicky, Student Research Assistant
  • Tammie Bassford, MD
  • Jeff Greenfield, Student Research Assistant
  • Lynne Tomasa, PhD
  • Freya Abraham, Student Research Assistant

Partners

UA Institutional Review Board Staff:

  • Christine Melton-Lopez, MS, CIP
  • Mariette Marsh, MPA, CIP/CHPC/CHRC

U of WISC: Ausderau Lab:

  • Karla Ausderau, PhD, OTR/L

Special Olympics of Arizona:

  • Gianna Zola, Health & Athlete Leadership Senior Coordinator

National Down Syndrome Society:

  • Dana Sciullo, MOT, OTR/L, Research Associate

Arizona Disabilities Planning Council:

  • Steve Freeman

American Association on Intellectual and Developmental Disabilities:

  • Margaret A. Nygren, EdD, FAAIDD, Exective Director & CEO

Southwest Autism Research & Resource Center/Arizona State University:

  • Joshua Anbar, DrPH, MPH