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

Karolina Krysinska, Perminder S. Sachdev, John Breitner, Miia Kivipelto, Walter Kukull, Henry Brodaty

Research output: Contribution to journalReview ArticleResearchpeer-review

27 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1031-1047
Number of pages17
JournalAlzheimer's and Dementia
Volume13
Issue number9
DOIs
Publication statusPublished - 1 Sep 2017
Externally publishedYes

Keywords

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

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