Einstein-Montefiore CTSA UM1 Element E Research Project
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“But people with disabilities—those with sensory, physical or cognitive impairments…remain left out of most initiatives to increase the diversity of research study populations.”
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The NIH recently designated people with disabilities (PWDs) as a population with health disparities. Adults with disabilities—especially those with developmental disabilities (PWDDs)-- have higher rates of diabetes, heart disease, GI diseases, obesity and other conditions (see table below). DDs span a continuum that includes ADHD, autism, cerebral palsy, Down syndrome, intellectual disability, and hearing/vison impairment. Further, this designation explicitly recognizes the intersectionality of disability with gender, racial group, class and sexual orientation.
Compared to their non-disabled peers, PWDs and PWDDs are under-represented in research on the very conditions for which they experience health disparities (see table below). Reasons for this may include researchers’ knowledge gaps, biases and misperceptions about PWD/PWDDs, and accessibility issues- along with the potential resource challenges of conducting inclusive research. Knowledge, attitudes, biases and perceptions (KABP) about barriers and benefits to greater inclusion constitute potentially modifiable roadblocks.
Our ICTR’s Element E project—D2/R3—applies translational science to reduce these roadblocks
D2/R3 Aims and Goals
D2/R3 is a mixed-methods, PWDD-engaged study of researcher-level perceived barriers and capacity to conduct disability-inclusive research. It will develop and test an intervention, informed by Prosci’s ADKAR® model of change management. We are partnering with nine other US sites with: CTSAs and Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research and University Centers of Excellence in Developmental Disabilities (UCEDDs) for community integration to address the following aims:
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Aim 1. Measure investigator and research team knowledge, attitudes, biases and perceptions regarding DD and inclusion of PWDDs in their research.
Aim 2. Co-design training on researcher-level factors that contribute to PWDDs’ under-representation in research based on findings from Aim 1.
Aim 3. Conduct randomized controlled trial (RCT) of the e-learning module.
The study’s over-arching goal is to promote equity in who benefits from NIH research. With its focus on adult PWDDs, D2/R3 seeks to:
- Close the gap in health outcomes research on adult PWDDS, especially as growing numbers of children with autism and other DDs transition to adulthood,
- Produce findings that generalize to all PWDs, given that DDs are a constellation of heterogenous life-span conditions, and;
- Ultimately, reduce the health disparities experienced by the DD population.
Please scan the QR code to get access to the D2/R3 survey or click here. Thank you!
Watch Frank Meeuwis, MSSW (D2/R3 consultant) speak about contributing to research as an adult with traumatic brain injury. Mr. Meeuwis co-presented with the D2/R3 team at the annual Association of University Centers on Disability’s conference (11/2024), on a panel entitled ”Translational Science Seminar Series Disability as Diversity: Reducing Researcher Roadblocks”.
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
Leadership:
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![Karen A. Bonuck, Ph.D.]()
Principal Investigator, D2,R3 Project
