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. 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

Karolina Krysinska  1 , Perminder S Sachdev  2 , John Breitner  3 , Miia Kivipelto  4 , Walter Kukull  5 , Henry Brodaty  6
Affiliations

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

Karolina Krysinska et al. Alzheimers Dement. 2017 Sep.

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.

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Figures

Figure 1.
Figure 1.
Study inclusion and exclusion criteria flowchart.
Figure 2.
Figure 2.
Populations captured in existing dementia registries. AAR - Arizona Alzheimer Registry; AD/RDSR/G - AD/Related Dementia State Registry (Georgia); API/CR - Alzheimer’s Prevention Initiative Colombian Registry; APR - Alzheimer’s Prevention Registry; BayDem - Bavarian Dementia Survey; CDCR - Camberwell Dementia Case Register; CERAD - Consortium to Establish a Registry for Alzheimer’s Disease; CHARIOT - Cognitive Health in Ageing Register; CREDOS - Clinical Research Center for Dementia of South Korea; DemReg - Dementia Research Registry North Thames DeNDRoN/EVIDEM; DDR - Danish Dementia Registry; DIAN - Dominantly Inherited Alzheimer Network; EPAD - European Prevention of Alzheimer’s Dementia; ERADOD/I - Experimental Registry for AD/other Dementias in Italy; FNAD - French National Alzheimer Database; GAP/TRC/PAD - Global Alzheimer Platform Trial Ready Cohort for Preclinical/ Prodromal AD; HMS - Health and Memory Study of Nord-Trøndelag; JDR - Join Dementia Research; IMAGE - IMAGE Project Population-Based Registry of AD; NACC - National Alzheimer’s Coordinating Center; NorKog - Norwegian Dementia Registry; NYSDH/ADODR - New York State Department of Health AD/Other Dementias Registry; PRODEM - Prospective Dementia Registry Austria ; ReDeCAr - Cognitive Impairment Centralized Case Registry in Argentina; ReDeGi - Registry of Dementia of Girona; SC/ADR - South Carolina AD Registry; SveDem - Swedish Dementia Registry; SBPSDR - Swedish Behavioural and Psychological Symptoms of Dementia Registry; SMRIR - Scottish Dementia Research Interest Register; WV/ADR - West Virginia AD Registry; WRAP - Wisconsin Registry for Alzheimer Prevention
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