Measuring Sex and Gender in U.S. Alzheimer’s Disease and Related Dementias (Adrd) Research

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Alzheimer's & Dementia: The Journal of the Alzheimer's Association



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BACKGROUND: Differences between men and women are common in Alzheimer's disease and related dementias (ADRD) research. What do they mean? To answer this, rigorous measurement is needed. We investigated current methods being used in ADRD research to measure sex/gender. METHOD: An online survey was sent to 38 federally-funded Alzheimer's Disease Research Centers (ADRCs), which are required to maintain research cohorts, and 38 federally-funded cohort studies on aging and cognition in the U.S. The response rate was 65.8% (n=50). The survey assessed whether studies enrolled men and women and study protocols for all measures of sex and gender. RESULTS: One or more personnel from 25 ADRCs/ADCs and 25 cohort studies completed the survey from October to December 2020. Of the 50 ADRCs/ADCs and cohort studies, all enrolled men and all but two cohort studies enrolled women. The majority indicated no documented definitions of "man" or "woman": 23/25 (92%) ADRCs/ADCs and 20/25 (80%) cohort studies. Of the seven reporting study definitions, sex/gender definitions included the following: male vs. female (n=2), biologic sex (n=1), defined by another data source ("NACC form" n=1), or only noted that sex/gender was self-reported (n=3). sIn 4/5 instances where multiple personnel reported on a ADRC/ADC or cohort study, reports were inconsistent [e.g., "sex" vs "gender" (n=1) or named "sex" vs unlisted (n=3)]. Most studies (20/25 ADRCs/ADCs, 17/25 cohort studies) had only one measure of sex/gender. In total, 52 measures of sex/gender were described: self-report (n=43), direct observation (n=5), obtained from secondary source (n=3), and biologic specimen (n=1). Self-report measures asked participants to report whether they identified as "male or female" or "man or woman." CONCLUSION: ADRD research efforts in the U.S. appear to consistently enroll men and women. However, there is a need to define these terms in ways that ensure inclusivity, representation, and consistency in data collection. It is essential to expand measures of sex/gender in ADRD research beyond self-report data to social, behavioral, and biologic markers in order to aid discovery of specific pathways that affect ADRD outcomes.


Cognitive Neuroscience | Social and Behavioral Sciences

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