{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T15:44:22Z","timestamp":1781624662528,"version":"3.54.5"},"reference-count":37,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T00:00:00Z","timestamp":1764288000000},"content-version":"vor","delay-in-days":27,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2025,11,1]],"date-time":"2025-11-01T00:00:00Z","timestamp":1761955200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Alzheimer's &amp;amp; Dementia"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:label\/>\n                    <jats:p>Despite their value for public health, research, and care, population\u2010based registries for Alzheimer's disease and related dementias (ADRD) remain limited.<\/jats:p>\n                    <jats:p>We conducted a scoping review of dementia registry studies through December 2023 and identified population\u2010based dementia registries in Organisation for Economic Co\u2010operation and Development countries. We characterized their structure and scope, assessed key themes, and developed recommendations for registry development.<\/jats:p>\n                    <jats:p>We identified 21 population\u2010based dementia registries from a review of 235 publications. These registries help fill gaps in dementia research by providing longitudinal data, improving case identification, and standardizing outcomes for clinical and policy use. However, many registries lack data on healthcare use and caregiving and have limited geographical coverage, thereby reducing their ability to inform research and public health efforts to address dementia burden in an era of rapidly evolving dementia diagnostics and treatments.<\/jats:p>\n                    <jats:p>As dementia cases rise and advancements in prevention, detection, and treatment accelerate, population\u2010based registries are essential for generating real\u2010world evidence to improve dementia care, policy, and outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Highlights<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>This scoping review identified 21 population\u2010based dementia registries across OECD countries, highlighting the current landscape and structural gaps.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Registries provide critical longitudinal data and standardization for research and policy but often lack information on healthcare use, caregiving, and broad geographic representation.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>With rising dementia rates and evolving treatments, population\u2010based registries are essential for producing real\u2010world evidence to strengthen care, research, and public health planning.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/alz.70938","type":"journal-article","created":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T08:48:26Z","timestamp":1764319706000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["A scoping review of population\u2010based dementia registries: advancing research, care, and policy"],"prefix":"10.1002","volume":"21","author":[{"given":"Haley","family":"Garland","sequence":"first","affiliation":[{"name":"Leonard D. Schaeffer Institute for Public Policy and Government Service University of Southern California  Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mireille","family":"Jacobson","sequence":"additional","affiliation":[{"name":"School of Gerontology University of Southern California  Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shengjia","family":"Xu","sequence":"additional","affiliation":[{"name":"Leonard D. Schaeffer Institute for Public Policy and Government Service University of Southern California  Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Zissimopoulos","sequence":"additional","affiliation":[{"name":"Sol Price School of Public Policy University of Southern California  Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,11,28]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"GliklichRE DreyerNA LeavyMB.Registries for Evaluating Patient Outcomes: A User's Guide.Agency for Healthcare Research and Quality;2014."},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/joim.12303"},{"key":"e_1_2_8_4_1","unstructured":"Evans\u2010LackoS AguzzoliE ReadS Comas\u2010HerreraA FarinaN.World Alzheimer Report 2024: Global Changes in Attitudes to Dementia.Alzheimer's Disease International;2024."},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2023.11701"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41582-024-00989-1"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2017.04.005"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/lrh2.10392"},{"key":"e_1_2_8_9_1","unstructured":"HopperL BowenC.Development of a Model for the National Dementia Registry.Dublin City University;2021."},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2020-043473"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1159\/000327701"},{"issue":"4","key":"e_1_2_8_12_1","first-page":"270","article-title":"The national Alzheimer's coordinating center (NACC) database: an Alzheimer disease database","volume":"18","author":"Beekly DL","year":"2004","journal-title":"Alzheimer Dis Assoc Disord"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1159\/000360278"},{"key":"e_1_2_8_14_1","article-title":"Best practices for a state Alzheimer's disease registry: lessons from Georgia","volume":"17","author":"Leonard EW","year":"2016","journal-title":"Minn J L Sci Technol"},{"key":"e_1_2_8_15_1","unstructured":"Office for the Study of Aging ASoPH University of South Carolina.2022 Annual Report: South Carolina Alzheimer's Disease Registry.University of South Carolina;2022.http:\/\/sc.edu\/study\/colleges_schools\/public_health\/documents\/alzheimers_registry_report.pdf"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2377-9-5"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF03324719"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2018.06.1971"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2021-058810"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD-230854"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2007.08.005"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-012100"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0052710"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1166(199604)11:4<369::AID-GPS429>3.0.CO;2-O"},{"key":"e_1_2_8_25_1","volume-title":"The Use of Real World Data 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