Dementia Registries Around the Globe and Their Applications: A Systematic Review

Overview

Journal Alzheimers Dement

Specialties Neurology
Psychiatry

Date 2017 Jun 4

PMID 28576507

Citations 39

Authors

Karolina Krysinska

Perminder S Sachdev

John Breitner

Miia Kivipelto

Walter Kukull

Henry Brodaty

Affiliations

Soon will be listed here.

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.

Citing Articles

Complexity of developing a nationwide model for a dementia registry in Egypt: A qualitative study.

Heikal S, Barsoum G, Salama M Alzheimers Dement. 2025; 21(2):e70011.

PMID: 40008918 PMC: 11863355. DOI: 10.1002/alz.70011.

Virginia Memory Project: Using the Healthy Brain Initiative Roadmap to design a statewide dementia registry.

Rhodes A, Staton A, French E, Price A, Battle B, MacDonald C Alzheimers Dement. 2025; 21(2):e14478.

PMID: 39817562 PMC: 11848194. DOI: 10.1002/alz.14478.

Design, development and evaluation of registry software for upper limb disabilities.

Moulaei K, Sheikhtaheri A, Haghdoost A, Nezhad M, Bahaadinbeigy K Healthc Technol Lett. 2024; 11(6):496-503.

PMID: 39720749 PMC: 11665789. DOI: 10.1049/htl2.12115.

Physical therapy registries worldwide: A systematic review.

Banaye Yazdipour A, Ayyoubzadeh S, Nazary-Moghadam S, Arji G, Meigooni F, Kimiafar K Health Sci Rep. 2024; 7(9):e2312.

PMID: 39286739 PMC: 11403353. DOI: 10.1002/hsr2.2312.

Insights from a 10-year Australasian idiopathic hypersomnia patient data registry study.

Anderson J, Yee B, Grunstein R, Matar E, Chadwick M, Machan E J Clin Sleep Med. 2024; 20(12):1955-1964.

PMID: 39150700 PMC: 11609833. DOI: 10.5664/jcsm.11298.

References

Khachaturian A, Meranus D, Kukull W, Khachaturian Z . Big data, aging, and dementia: pathways for international harmonization on data sharing. Alzheimers Dement. 2013; 9(5 Suppl):S61-2. DOI: 10.1016/j.jalz.2013.09.001. View

Imamura T, Hirono N, Hashimoto M, Shimomura T, Tanimukai S, Kazui H . Clinical diagnosis of dementia with Lewy bodies in a Japanese dementia registry. Dement Geriatr Cogn Disord. 1999; 10(3):210-6. DOI: 10.1159/000017121. View

Fillenbaum G, van Belle G, Morris J, Mohs R, Mirra S, Davis P . Consortium to Establish a Registry for Alzheimer's Disease (CERAD): the first twenty years. Alzheimers Dement. 2008; 4(2):96-109. PMC: 2808763. DOI: 10.1016/j.jalz.2007.08.005. View

Fargo K, Carrillo M, Weiner M, Potter W, Khachaturian Z . The crisis in recruitment for clinical trials in Alzheimer's and dementia: An action plan for solutions. Alzheimers Dement. 2016; 12(11):1113-1115. DOI: 10.1016/j.jalz.2016.10.001. View

Alladi S, Mekala S, Chadalawada S, Jala S, Mridula R, Kaul S . Subtypes of dementia: a study from a memory clinic in India. Dement Geriatr Cogn Disord. 2011; 32(1):32-8. DOI: 10.1159/000329862. View

Romero H, Welsh-Bohmer K, Gwyther L, Edmonds H, Plassman B, Germain C . Community engagement in diverse populations for Alzheimer disease prevention trials. Alzheimer Dis Assoc Disord. 2014; 28(3):269-74. PMC: 4139415. DOI: 10.1097/WAD.0000000000000029. View

Cohen D, Paveza G, LEVY P, Ashford J, Brody J, Eisdorfer C . An Alzheimer's disease patient registry: the Prototype Alzheimer Collaborative Team (PACT). Aging (Milano). 1990; 2(3):312-6. DOI: 10.1007/BF03323941. View

Evans D, Scherr P, Smith L, Albert M, Funkenstein H . The east Boston Alzheimer's Disease Registry. Aging (Milano). 1990; 2(3):298-302. DOI: 10.1007/BF03323937. View

De Braekeleer M, Cholette A, Mathieu J, Boily C, Robitaille Y, Gauvreau D . Familial factors in Alzheimer's disease (IMAGE project). A case-control study in the Saguenay-Lac-St-Jean region (Quebec, Canada). Eur Neurol. 1989; 29 Suppl 3:2-8. DOI: 10.1159/000116473. View

10.

Anthony S, Pradier C, Chevrier R, Festraets J, Tifratene K, Robert P . The French National Alzheimer database: a fast growing database for researchers and clinicians. Dement Geriatr Cogn Disord. 2014; 38(5-6):271-80. DOI: 10.1159/000360281. View

11.

Kuller L, Ganguli M, Ratcliff G, Huff F, Belle S, Detre K . The University of Pittsburgh Alzheimer's Disease Patient Registry: the Monongahela Valley Independent Elders Survey (MoVIES). Aging (Milano). 1990; 2(3):302-5. DOI: 10.1007/BF03323938. View

12.

Wilkins S, Best R, Evans S . Need for a roadmap for development of a coordinated national registry programme. Intern Med J. 2015; 45(11):1189-92. DOI: 10.1111/imj.12898. View

13.

Larsson S, Lawyer P, Garellick G, Lindahl B, Lundstrom M . Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value. Health Aff (Millwood). 2011; 31(1):220-7. DOI: 10.1377/hlthaff.2011.0762. View

14.

Lillquist P . Challenges in surveillance of dementias in New York State. Prev Chronic Dis. 2005; 1(1):A08. PMC: 544531. View

15.

Weddell J . Registers and registries: a review. Int J Epidemiol. 1973; 2(3):221-8. DOI: 10.1093/ije/2.3.221. View

16.

Beekly D, Ramos E, van Belle G, Deitrich W, Clark A, Jacka M . The National Alzheimer's Coordinating Center (NACC) Database: an Alzheimer disease database. Alzheimer Dis Assoc Disord. 2004; 18(4):270-7. View

17.

Persson K, Braekhus A, Selbaek G, Kirkevold O, Engedal K . Burden of Care and Patient's Neuropsychiatric Symptoms Influence Carer's Evaluation of Cognitive Impairment. Dement Geriatr Cogn Disord. 2015; 40(5-6):256-67. DOI: 10.1159/000437298. View

18.

Seiler S, Schmidt H, Lechner A, Benke T, Sanin G, Ransmayr G . Driving cessation and dementia: results of the prospective registry on dementia in Austria (PRODEM). PLoS One. 2013; 7(12):e52710. PMC: 3530518. DOI: 10.1371/journal.pone.0052710. View

19.

Schreurs B . The West Virginia Alzheimer's Disease Registry: helping West Virginia cope. W V Med J. 2011; 107(3):44-5. View

20.

Francesconi P, Gini R, Roti L, Bartolacci S, Corsi A, Buiatti E . The Tuscany experimental registry for Alzheimer's disease and other dementias: how many demented people does it capture?. Aging Clin Exp Res. 2007; 19(5):390-3. DOI: 10.1007/BF03324719. View