Evidence map›Paper›PMID 28576507›Full record

SynthesisAlzheimer's & dementia : the journal of the Alzheimer's Association2017

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

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

Open access · greenAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
46citing papers in PubMed, 1 pooled it
5.8field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

46 citing papers in PubMed, 1 synthesis or guideline pooled it, 92 citations in OpenAlex.

  1. Pooled it
  2. Expert opinion on Alzheimer's disease diagnostics and management in Central Eastern European countries representing 88 million population.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026
    Article
  3. Review
  4. Article
  5. Review
  6. Article
  7. Tracking and its Potential for Older Adults with Memory Concerns.Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference · 2025
    Article
  8. Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2024
    Article
  9. Article
  10. Review
  11. Article
  12. Article
  13. Dementia in Germany: Epidemiology and Prevention Potential.Deutsches Arzteblatt international · 2023
    Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 5 institutions in 4 countries.

Karolina KrysinskaFaculty of Medicine, Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales (UNSW Sydney), NSW, Australia.
Perminder S SachdevFaculty 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.
John BreitnerMcGill University Faculty of Medicine, Montreal, Quebec, Canada.
Miia KivipeltoDivision of Clinical Geriatrics, Department of Neurobiology, Karolinska Institutet, Care Sciences and Society (NVS), Huddinge, Sweden.
Walter KukullNational Alzheimer's Coordinating Center (NACC), University of Washington, Seattle, WA, USA.
Henry BrodatyFaculty 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.
Dementia Collaborative Research Centres · AUKarolinska Institutet · SEMcGill University · CAUniversity of Washington · USUNSW Sydney · AU

Funding

NATIONAL ALZHEIMERS COORDINATING CENTER (NACC)U01AG016976 · NIA · UNIVERSITY OF WASHINGTON · PI KUKULL, WALTER ANTHONY · 1999 to 2020
$72.8M
NIA NIH HHS U01 AG016976
6 · The paper itself

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.

Indexed as

RegistriesDementiaGlobal HealthHumansAlzheimer's diseaseDatabaseDementiaEpidemiologyPreclinicalQuality of careRegistrySystematic review

Identifiers

PMID28576507
PMCPMC6872163
OpenAlexW2618314005

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.