Journal
ALZHEIMERS & DEMENTIA
Volume 13, Issue 9, Pages 1031-1047Publisher
WILEY
DOI: 10.1016/j.jalz.2017.04.005
Keywords
Alzheimer's disease; Database; Dementia; Epidemiology; Quality of care; Preclinical; Registry; Systematic review
Categories
Funding
- Dementia Collaborative Research Centre-Assessment and Better Care, University of New South Wales (UNSW), Australia
- Alzheimer Disease International
- Global CEO Initiative on Alzheimer's Disease (CEOi)
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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. (C) 2017 the Alzheimer's Association. Published by Elsevier Inc. All rights reserved.
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