Format

Send to

Choose Destination
Alzheimers Dement. 2017 Sep;13(9):1031-1047. doi: 10.1016/j.jalz.2017.04.005. Epub 2017 May 30.

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

Author information

1
Faculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia.
2
Faculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; NPI, Euroa Centre, School of Psychiatry, UNSW Sydney, NSW, Australia.
3
McGill University Faculty of Medicine, Montreal, Quebec, Canada.
4
Division of Clinical Geriatrics, Department of Neurobiology, Karolinska Institutet, Care Sciences and Society (NVS), Huddinge, Sweden.
5
National Alzheimer's Coordinating Center (NACC), University of Washington, Seattle, WA, USA.
6
Faculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia; NPI, Euroa Centre, School of Psychiatry, UNSW Sydney, NSW, Australia. Electronic address: h.brodaty@unsw.edu.au.

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.

KEYWORDS:

Alzheimer's disease; Database; Dementia; Epidemiology; Preclinical; Quality of care; Registry; Systematic review

PMID:
28576507
DOI:
10.1016/j.jalz.2017.04.005
[Indexed for MEDLINE]

Supplemental Content

Full text links

Icon for Elsevier Science
Loading ...
Support Center