Description

According to the Centers for Disease Control and Prevention (CDC), 1 in 4 adults in the U.S. has a disability, approximately 29% of the overall population. 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).

Disability may present as salient to others or be non-visible (e.g., autism, Long COVID). Non-visible disabilities comprise 70-80% of all disabilities; robust data finds stronger negative attitudes towards non-visible (vs. visible) disabilities.

People with Disabilities (PWDs) are under-represented in health research. Reasons include: a) structural elements of research: poorly justified exclusion criteria, PWDs not designated as a vulnerable group, b) access barriers: physical, sensory, literacy; and c) PWDs skepticism due to researcher bias, lack of perceived benefit, focus on cure vs. quality of life. Data on provider attitudes towards people with disabilities (PWDs) is scant.

KAP of barriers and benefits are modifiable roadblocks to including PWDs in research. The research team will develop and test tools to increase researcher motivation and capacity to mitigate perceived barriers. For Aims 1 and 2 of D2/R3, the research team engaged the 10 US sites (Einstein is one) that are Clinical and Translational Science Awards (CTSAs) and Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research and University Centers of Excellence in Developmental Disabilities (UCEDDs).

Timeliness - This study is timely and novel as the perception of disability in research settings has shifted in recent years. Made apparent by the NIHs designation of PWDs as a health disparities population and changes to the Research, Condition, and Disease Categories (RCDCs) (i.e., disability research is now included on the list).

This registration is exclusive to Aim 3 of the D2/R3 study.