Measuring Sex and Gender in Aging and Alzheimer’s Research: Results of a National Survey

Abstract

Abstract Objectives Differences between men and women are common in published research on aging and Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD). What do these differences mean? To answer this, rigorous measurement is needed. We investigated current methods for measuring sex/gender in aging and AD/ADRD cohort studies. Methods An online survey was sent to National Institute on Aging-funded Alzheimer’s Disease Research Centers (n = 38) and investigator-initiated cohort studies (n = 38) to assess practices around enrollment of men and women and measurement of sex and gender. Results The response rate was 65.8% (n = 50). All enrolled men and all but two investigator-initiated studies enrolled women. Most cohorts (43/50) had no documented definitions for categories of “men” or “women.” Over 85% of cohorts relied solely on self-report questions to capture sex/gender data (n = 43/50). Issues with administration were also identified (n = 7). Discussion Our findings identify gaps in current approaches used to measure sex and gender in aging and AD/ADRD research. We discuss opportunities to bridge these gaps and advance measurement of sex and gender in aging and AD/ADRD research. Changes are needed to ensure inclusion and representation of sociocultural diversity in research samples, and consistency in data collection in aging and AD/ADRD research.