Memory clinics as vehicles of research into dementia: The NACC example

Abstract

AbstractBackgroundAlzheimer’s Disease Research Centers (ADRC) in the U.S, (N∼30) all enroll participants through similar clinical settings while applying a variety of active and passive recruitment methods. Thus, the voluntary enrollment and other characteristics of participants may resemble many referral‐based memory clinics not at ADRCs. In most cases however, the enrollee may not reflect the composition of the general population. When standardized clinical examination and data are applied across these independent case series valuable research data can be collected and both cognitively normal and cognitively impaired groups can be compared cross‐sectionally and longitudinally. The National Alzheimer’s Coordinating Center (NACC) receives, curates, stores and distributes the aggregate data to researchers on request. https://www.alz.washington.edu MethodThe Uniform Data Set (UDS) was established in 2005 and applied in the clinics of the ADRCs. By December 2019, data from 42,022 participants were included; 6,056 of those participants had also died and completed standardized neuropathology exam and data collection. In addition 28,519 UDS participants have data on 2 or more clinic visits.ResultThis conglomerate “case series” is comprised of cognitively normal through demented individuals etiologically classified by underlying disease (e.g., AD, VaD, LBD et al). The value of common data collection is also highlighted as DNA are made available for genomic studies resulting in new genetic associations with disease. In addition the overall data have led researchers to produce some 500 research publications.ConclusionCombination of standardized data across independent memory clinic settings can lead to valuable research findings. While population‐based research is still most valuable for inferring the occurrence of various conditions in the community, these clinic‐based case‐series can provide valuable insights and comparisons to further our knowledge of Alzheimer’s disease and related dementias.