Most federally funded research fails to include people with disabilities, contributing to poor health outcomes for people in this group. Among the possible reasons for this exclusion: Researchers may be concerned about safety risks for this population, assume individuals aren’t able to provide consent, or lack the skill to engage with such people.

To better understand why those with intellectual and developmental disabilities (IDD) are excluded from research studies, Karen Bonuck, Ph.D., and colleagues interviewed leaders of IDD and translational science programs at 10 U.S. institutions, including Montefiore Einstein. In a paper published online December 4 in the Journal of Clinical and Translational Science, the researchers report several attitudinal and logistical barriers that contribute to this exclusion, particularly that interviewees didn’t know that people with IDD can participate in research and are valuable sources of information. Using an online instructional module informed by this research, Dr. Bonuck and colleagues are now conducting a randomized clinical trial aimed at influencing researchers to include people with disabilities at each stage of their research.

Dr. Bonuck is professor of family and social medicine, of obstetrics & gynecology and women's health, and of pediatrics at Einstein and co-director of the Rose F. Kennedy University Center for Excellence in Developmental Disabilities at Einstein and Montefiore.