All of Us Research Program
Disability Community Engagement Partner Project Funded
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 over 20 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 at:
For more information about the project contact:
- Charles E. Drum, MPA, JD, PhD, Principal Investigator & Project Director, at email@example.com or (301) 545-6140, Extension 5, or
- Karl Cooper, JD., Co-Investigator & Director of Engagement, at firstname.lastname@example.org or (301) 545-6140, Extension 2.
This award is supported by NIH award OT2 OD031916.
All of Us Research Program- 2018-2021
AAHD introduces our Call to Action for people with disabilities to get involved in the All of Us Research Program. To learn more about Call to Action, please click here.
AAHD has continued its partnership with HCM Strategists (HCM) 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.
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.
The American Association on Health and Disability (AAHD) is proud to be part of this initiative that will include people with disabilities and work to improve the health status of people with disabilities across the nation. AAHD will continue conducting 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 will also continue working with 5 sites across the country, assisting them in educating potential participants from their constituencies. The 5 sites are as follows:
- Lakeshore Foundation – Birmingham, AL
- University of Montana Rural Institute – Missoula, MT
- Center for Independence of the Disabled, NY – New York, NY
- University of New Mexico Center for Development and Disability – Albuquerque, NM
- Independent Living Research Utilization – Houston, TX
To learn more about the program and how to join, please visit https://www.joinallofus.org/together. To learn more about AAHD’s outreach and communication efforts, contact Roberta Carlin, at email@example.com or Karl Cooper, at firstname.lastname@example.org or call AAHD at (301) 545-6140 or check out these resources:
- Frequently Asked Questions (FAQ) about All of Us
- Slides from joint webinar with APHA/NACCHO/AAHD
- All of Us Champions Program Overview
- Frequently Asked Questions from NIH
- How To Sign Up
- All of Us FAQ large print
- Spanish Call to Action
- Call to Action
- All of Us brochure
- NIH All of Us Research Program Webinar for Friends NCBDDD (June 21, 2018)
- All of Us Research Program Webinar for the Univ. of MT Rural Institute (October 31, 2018)
- All of Us Includes Disability Webinar for the Association of University Centers on Disabilities (AUCD) (February 6, 2019)
- All of Us Includes Disability Webinar for the Independent Living Research Utilization (ILRU) (July 17, 2019)”
- AAHD Press Release on the All of Us launch (5/6/2018)
- AAHD Press Release on Call to Action (2/19/2019)
- Press Release on All of Us Expands Partnership with AAHD (9/9/2021)