Einstein-Montefiore CTSA UM1 Element E Research Project
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According to the Centers for Disease Control and Prevention (CDC), 1 in 4 US adults in the U.S. have a disability. For example, adults with (vs. without) disabilities have higher rates of obesity (41.6% v. 29.6%), smoking (21.9% v. 10.9%), heart disease (9.6% v. 3.4%), and diabetes (15.9% v. 7.6%), and lower rates of preventive care (e.g., mammograms, cervical cancer screening). Disabilities may be present at birth or acquired, of visible or non-visible, and of varying functional impacts.
This Element E project is a mixed methods, study focused on researchers’ knowledge and perceptions about including disability in their research. The goal of D2/R3’s current phase is to evaluate an online learning module about people with disabilities and research—from the perspective of researchers- in a randomized controlled trial (RCT). The online learning module was created by the study team with input from community partners and fellow researchers
Our ICTR’s Element E project addresses translational research challenges that create roadblocks for disability research
D2/R3 has partnered with nine other US sites that have CTSA programs along with Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research, and; University Centers of Excellence in Developmental Disabilities Education, Research and Service (UCEDDs).
The study’s over-arching goals are to ensure everyone benefits from NIH funded research. Element E seeks to:
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- Close the gap in health outcomes for adult PWDs, especially as growing numbers of children with autism and other disabilities transition to adulthood.
- Ultimately, improve the health of everyone, including PWDs.
Our CTSA Hub Partners
If you are interested in learning more, please contact Dr. Karen Bonuck, Principal Investigator of D2/R3: karen.bonuck@einsteinmed.edu and Patrick George III, Study Coordinator of D2/R3: Patrick.georgeiii@einsteinmed.edu
- Bonuck K, Fishman A. Reducing translational science roadblocks to disability research. Journal of Clinical and Translational Science. 2025;9(1):e174. doi:10.1017/cts.2025.10073
- Researchers’ Roadblocks to Including People with Intellectual and Developmental Disabilities (DD) in research: Translational Science and I/DD Program Leaders Insights (manuscript under review at JCTS) (“in press”)
- Qualitative Coding Guide: document developed to identify accessibility needs for community partners assisting with a manuscript write-up.
Scan the QR code and join the study if you have:
- Conducted human subjects research (in the past 3 years)
- Research primarily focuses on adults
- Did not participate in D2/R3 (survey) or focus groups
- Agree to complete the 1 hour baseline session in one sitting
Leadership:
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![Karen A. Bonuck, Ph.D.]()
Principal Investigator, D2,R3 Project
