Dementia registries around the globe and their applications: A systematic review.

TitleDementia registries around the globe and their applications: A systematic review.
Publication TypeJournal Article
Year of Publication2017
AuthorsKrysinska K, Sachdev PS, Breitner JCS, Kivipelto M, Kukull W, Brodaty H
JournalAlzheimers Dement
Date Published2017 May 30
ISSN1552-5279
Abstract

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers.

DOI10.1016/j.jalz.2017.04.005
Alternate JournalAlzheimers Dement
PubMed ID28576507

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