Research Highlight: Understanding Social Risk Factors in Research Participation

FTD Disorders Registry Program Manager and ALLFTD Liaison Sweatha Reddy presented a poster on Understanding Social Risk Factors in Research Participation at the Alzheimer's Association International Conference in Philadelphia, PA. This poster compared Registry participants living in the United States in two cohorts, those who were enrolled in the ALLFTD Study and those who were not.

Comparing the two groups, 40.5% of the Registry-Only cohort  and 49.3% of the ALLFTD cohort lived in communities considered "low disadvantage," suggesting they may have fewer socioeconomic risk factors to research participation. The majority of participants, 87.9% for the Registry-Only cohort and 85.8% of ALLFTD cohort lived in urban areas. Only 3.2% of both groups lived in rural communities.

Based on these reports, socioeconomic and geographic factors may play a role in receiving an accurate diagnosis, access to medical centers, and the ability to participate in research. The majority of the Registry participants lived in less disadvantaged neighborhoods in urban areas with more access to services and support. This highlights the need for outreach to more disadvantaged and rural communities.

The Registry is developing and executing an engagement strategy to connect with diverse individuals willing to participate in research that could advance FTD disorders research.

Sweatha worked with a number of individuals in developing this poster including Robert Reinecker and Carrie Milliard, MS, CGC, CCRC from the FTD Disorders Registry; Hilary W. Heuer, PhD Adam L. Boxer, MD, PhD and Howard J. Rose, MD from the University of California San Francisco Weill Institute for Neurosciences, Leah K. Forsberg, PhD and Bradley F. Boeve, MD from the Mayo Clinic Department of Neurology in Rochester, MN.