Introducing social determinants of health to the Alzheimer's Disease Research Center network: Development and implementation in the uniform data set

The Alzheimer's Disease Research Centers (ADRCs) consortium represents a critical locus of research on Alzheimer's disease and related disorders (ADRD) prevention, diagnosis, and intervention. Through the National Alzheimer's Coordinating Center's (NACC) standardized protocol, the Uniform Data Set (UDS), ADRCs have collected rich, harmonizable clinical and cognitive data. However, the collection of social data has been sparse and Center specific, constraining ADRD science that addresses research priorities on social determinants of health (SDOH) and health equity. Capitalizing on the transition to a revised UDS version 4, an interdisciplinary committee representing 10 ADRCs reviewed the literature and instrumentation, ultimately creating a brief module covering multiple domains and levels of exposure required for mechanistic studies of SDOH and brain health. This article offers rationale, empirical support, and guidance for using the selected constructs: transportation security, financial security, social connectedness, health care experiences, and discrimination, as well as recommendations for next steps that each ADRC can take to maximize local and field-level progress. HIGHLIGHTS: Social determinants of health (SDOH) play a role in Alzheimer's disease and related dementias (ADRD) risk, diagnosis, care, and research participation. A new module adds SDOH to a revised Uniform Data Set (UDS) for the Alzheimer's Disease Research Center (ADRC) consortium. UDS SDOH include transportation, socioeconomic status, social relationships, health care, and discrimination. We provide evidence for causal SDOH associations with ADRD and guidelines for use. We include recommendations for next steps and expanding the impact of the SDOH module.