The Alzheimer’s & Dementia Disparities Engagement Network (ADDEN)* held its first webinar on the importance of patient and community outreach in Alzheimer’s clinical research. The webinar highlighted insights from leaders at North Carolina A&T State University, the University of Pennsylvania Penn Memory Center, and from a currently enrolled clinical trial volunteer.

Panelists included:

  • Goldie S. Byrd, PhD, Professor and Executive Director, Center for Outreach in Alzheimer’s Aging and Community Health at North Carolina A&T State University
  • Tigist Hailu, MPH, Director of Diversity in Research and Education, Penn Memory Center, Healthy Brain Research Center, University of Pennsylvania
  • Florence Collins-Hardy, Penn Memory Center NACC study participant and enrolled in the brain donation program

Key Takeaways from the Webinar Include:

For Research Partners

  • Persistent and multi-touch community engagement is key to building trust between research institutions and diverse communities.
  • Dedicated and diverse staffing is critical to building bridges between underrepresented populations and research institutions.
  • Approaching research engagement from a “community empowerment” lens is helpful for overcoming stigma and for identifying community-based research priorities.

For Community Partners

  • Research engagement is a potential opportunity to access resources and support for your constituents/clients/members.
  • Community-based organizations are important partners for building trust and for generating research referrals.
  • Your voice matters in research and deserves a seat at the table.

Click here to view the slides from this event.
*ADDEN is partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (4192-USAA)