Einstein-Montefiore CTSA UM1 Element E Research Project
People with disabilities (PWDs) —especially those with developmental disabilities
Compared to their non-disabled peers, PWDs and PWDDs have lower rates of participation in research on the very conditions they experience at higher rates (see table below). Reasons for this may include researchers’ knowledge gaps, misperceptions about PWD/PWDDs, and accessibility issues, along with the potential resource challenges of conducting research. Knowledge, attitudes, and perceptions about barriers and benefits to greater research participation 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 research that includes PWDs an PWDDs. 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:
Aim 1. Measure investigator and research team knowledge, attitudes 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 ensure everyone benefits from NIH research. 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, improve the health of everyone, including PWDDs.
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:
Principal Investigator, D2,R3 Project
