title: Geographically overlapping Alzheimer's disease registries: comparisons and implications.
abstract: In the medical and epidemiologic literature, a registry denotes a data base in which registrants share some common characteristic such as disease category. One criticism of registries is that they frequently collect subjects in a haphazard fashion and, hence, are "nonrepresentative of the population purportedly being represented." In this report, we compare two registries: an incident-based Alzheimer's Disease Patient Registry (ADPR) recruiting subjects for epidemiologic studies from a large health maintenance organization; and an Alzheimer's Disease Research Center (ADRC) registry recruiting subjects for phenomenologic, biologic, and pharmacologic studies. While these registries share personnel, overlap geographically, and use similar diagnostic procedures, they differ substantially in their missions and resulting recruitment strategies. We compared these registries with respect to demographic characteristics and cognitive features at subject entry. Subjects enrolled in the incident-based registry are older and report shorter time between symptom onset and recruitment. They are less demented and mirror the general population demographically more closely than do subjects in the other registry. The ADRC registry contains a much greater proportion of subjects with higher educational attainment.
authors.affiliation: Department of Pathology, University of Washington, Seattle 98105-6099, USA.
authors.forename: R L
authors.initials: RL
authors.lastname: Barnhart
authors.forename: G
authors.initials: G
authors.lastname: van Belle
authors.forename: S D
authors.initials: SD
authors.lastname: Edland
authors.forename: W
authors.initials: W
authors.lastname: Kukull
authors.forename: S
authors.initials: S
authors.lastname: Borson
authors.forename: M
authors.initials: M
authors.lastname: Raskind
authors.forename: L
authors.initials: L
authors.lastname: Teri
authors.forename: P
authors.initials: P
authors.lastname: McLean
authors.forename: E
authors.initials: E
authors.lastname: Larson
mesh_terms: D000367:Age Factors; D017668:Age of Onset; D000368:Aged; D000544:Alzheimer Disease / Q000175:diagnosis / Q000453:epidemiology*; D003072:Cognition Disorders / Q000175:diagnosis / Q000453:epidemiology; D004522:Educational Status; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D008875:Middle Aged; D018579:Patient Selection; D011581:Psychological Tests; D012042:Registries; D012737:Sex Factors