All of Us – News
Disability Community Engagement Partner Project Funded (2021 – present)
The National Institutes of Health (NIH) announced on September 9th, 2021, that AAHD’s Disability Community Engagement Partner Project (DCEPP) is one of seven national community partners that has been funded by NIH’s All of Us Research Program to strengthen recruitment of participants and researchers underrepresented in biomedical and health research. All of Us is a national effort that aims to build one of the largest, most diverse databases of health information from one million or more people that researchers can use to study health and disease and advance the provision of individualized health care (aka “Precision Medicine”). With this new funding, AAHD will partner with a national consortium of 25 national and local disability organizations to increase the participation of persons with disabilities in the All of Us Research Program and address the unique needs of the disability community.
The NIH award announcement can be found on NIH’s News and Events.
You can also read AAHD’s Press Release on the expanded project. For more information about the project contact:
- Charles E. Drum, MPA, JD, PhD, Principal Investigator & Project Director, at cdrum@aahd.us or (301) 545-6140, Extension 5, or
- Karl Cooper, JD., Co-Investigator & Director of Engagement, at kcooper@aahd.us or (301) 545-6140, Extension 2.
This award is supported by NIH award OT2 OD031916.
Precision Medicine
Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup, including genes. By partnering with 1 million diverse people who share information about themselves over many years, the All of Us Research Program will enable research to more precisely prevent and treat a variety of health conditions. The All of Us Research Program seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals and responsible return of research information. Participants will be able to access their own health information, summary data about the entire participant community and information about studies and findings that result from All of Us.
All of Us Research Program (2018-2021)
AAHD started its work with the All of Us Research Program in 2018 through a partnership with HCM Strategists (later Pyxis Partners) and National Institutes of Health (NIH) to raise awareness and increase outreach for the All of Us Research Program. In May 2018, NIH launched national enrollment for the All of Us Research Program – a momentous effort to advance individualized prevention, treatment and care for people of all backgrounds, including people with disabilities. The All of Us Research Program is a historic effort to gather health data from one (1) million or more people living in the United States to accelerate research and improve health.
Prior Outreach
The American Association on Health and Disability (AAHD) is proud that this initiative includes people with disabilities and works to improve the health status of people with disabilities across the nation. From 2018-2021, AAHD conducted national outreach on the program using social media, webinars, newsletters and conference exhibits to assist All of Us in developing a disability-focused rationale for why people with disabilities should participate in the program. AAHD worked with 8 different sites across the country, assisting them in educating potential participants from their constituencies. The 8 sites were as follows:
- Atlantis Community, Inc. – Denver, CO
- Boston Center for Independent Living – Boston, MA
- Center for Independence of the Disabled, NY – New York, NY
- Independent Living Research Utilization – Houston, TX
- Lakeshore Foundation – Birmingham, AL
- Progress Center for Independent Living – Chicago, IL
- University of Montana Rural Institute – Missoula, MT
- University of New Mexico Center for Development and Disability – Albuquerque, NM