Representativeness of samples enrolled in Alzheimer's disease research centers

Abstract

Abstract To generalize findings on the mechanisms and prognosis in Alzheimer's disease and related dementias (ADRD), it is critical for ADRD research to be representative of the population. Sociodemographic and health characteristics across ethnoracial groups included in the National Alzheimer's Coordinating Center sample (NACC) were compared to the nationally representative Health and Retirement Study (HRS). Baseline NACC data (n = 36,639) and the weighted 2010 HRS wave (N = 52,071,840) were included. We assessed covariate balance by calculating standardized mean differences across harmonized covariates (i.e., sociodemographic, health). NACC participants were older, more educated, with worse subjective memory and hearing, but endorsed fewer depressive symptoms compared to HRS participants. While all racial and ethnic groups in NACC differed from HRS participants in the same way overall, these differences were further amplified between racial and ethnic groups. NACC participants do not represent the U.S. population in key demographic and health factors, which differed by race and ethnicity. HIGHLIGHTS We examined selection factors included in NACC studies compared to a nationally representative sample. Selection factors included demographic and health factors and self‐reported memory concerns. Results suggest that NACC participants are not representative of the U.S. population. Importantly, selection factors differed across racial and ethnic groups. Findings are suggestive of selection bias within NACC studies.

Keywords

• Alzheimer's disease centers
• generalizability
• racial/ethnic disparities
• recruitment