Establishing a Framework for Gathering Structural and Social Determinants of Health in Alzheimer's Disease Research Centers

Shana D. Stites, Sharnita Midgett, Dawn Mechanic-Hamilton, Megan Zuelsdorff, Crystal M. Glover, David X. Marquez, Joyce E. Balls-Berry, Marissa L. Streitz, Ganesh Babulal, Jean Francois Trani, J. Neil Henderson, Lisa L. Barnes, Jason Karlawish, Dave A. Wolk

Research output: Contribution to journalArticlepeer-review


Structural and social determinants of health (SSDoH) are environmental conditions in which individuals are born, live, learn, work, play, worship, and age that affect health, functioning, and quality-of-life outcomes across the life course. Growing evidence suggests that SSDoH can help to explain heterogeneity in outcomes in Alzheimer's disease and Alzheimer's disease and related dementias (AD/ADRD) research and clinical practice. The National Institute on Aging has prioritized collecting SSDoH data to elucidate disease mechanisms and aid discovery of disease-modifying treatments. However, a major nexus of AD/ADRD research, the national network of Alzheimer's Disease Research Centers (ADRCs), collects few SSDoH data. We describe a framework for feasibly gathering and modeling SSDoH data across ADRCs. We lay out key constructs, their measures, and empirical evidence for their importance in elucidating disease and prevention mechanisms. Toward a goal of translation, the framework proposes a modular structure with a core set of measures and options for adjunctive modules. We describe considerations for measuring SSDoH in existing geographically and culturally diverse research cohorts. We also outline a rationale for universal implementation of a set of SSDoH measures and juxtapose the approach with alternatives aimed at collecting SSDoH data.

Original languageEnglish (US)
Pages (from-to)694-703
Number of pages10
Issue number5
StatePublished - Jun 1 2022


  • Alzheimer's
  • Measurement
  • Social determinants of health

ASJC Scopus subject areas

  • General Medicine


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