Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants

Genetic data help detect preclinical Alzheimer's disease and target individuals for clinical trials, making genetic research engagement critical for continued advancement in dementia prevention and treatment.

To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers.

Data from the National Alzheimer's Coordinating Center Uniform Data Set (2009-2016) were obtained along with genetic sample availability. Logistic regression was used to assess independent contributions of demographic and clinical characteristics to the probability of sample provision. Sites contributing data completed a brief survey exploring regulatory and scientific issues related to genetic research engagement.

Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, non-Hispanic ethnicity, normal cognition, and greater than 5 years of follow-up were associated with greater probability of availability. Sites identified refusals as the most frequent barrier to sample provision, followed by staff availability.

These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.