NIH INCLUDE Project Presents “Building a Diverse Community for Down Syndrome Research" Virtual Workshop

Participants in the workshop included researchers, self-advocates, members of the Down syndrome community, governmental and agency partners, healthcare and service providers, and experts in diversity and inclusion. The participants represented members of groups underrepresented in biomedical research, including Blacks or African Americans, Hispanics or Latinos, American Indians and those from rural areas.

During the two days of presentations at the workshop, participants learned about some of the best strategies to increase diversity, equity, inclusion, and accessibility (DEIA) of individuals with Down syndrome in research. These include efforts to build trust, improve communication, facilitate research participation while balancing the burdens and value added, and create partnerships that promote open feedback and engagement of all participants. In addition, speakers described effective strategies to enhance recruitment of underrepresented groups into biomedical research to increase the pool of diverse investigators working in Down syndrome research. Accomplishing these goals will require broad thinking and innovation. INCLUDE aims to engage and amplify the voices of self-advocates and family members and to conduct community outreach to strengthen DEIA in research. This workshop is one example of efforts to engage the community, listen, learn and take action.

The recordings of the workshop and executive summaries will be available on the INCLUDE website.