{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T02:21:42Z","timestamp":1788315702548,"version":"build-2803163510"},"reference-count":35,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,1,1]],"date-time":"2025-01-01T00:00:00Z","timestamp":1735689600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2025,1]]},"abstract":"<jats:p>Background: Diabetes registries have grown in prevalence and incorporated patient engagement opportunities to support diabetes management. We aimed to understand the goals, purpose, and context for diabetes registries defined as patient-focused and how people with diabetes are engaging with these registries. Methods: We searched Pubmed, MEDLINE, Embase, and Emcare using the following criteria: (1) the population is people with diabetes mellitus, including type 1, type 2, and\/or gestational diabetes; and (2) the study describes a patient focused registry. Results: The search identified 346 citations, 9 of which were included. The goals of the registries included: developing referral systems, evaluating community-based interventions, collecting self-reported data, improving access to care, and fostering diabetes communities. The delivery settings were community-based, outpatient, or primary care. The methods of delivery and level of patient engagement varied between registries. Conclusions: This scoping review identified 9 diabetes registries, with varying goals, purposes and levels of patient engagement. It highlights a need for registries centered on people with diabetes to promote engagement and facilitate long-term diabetes self-management.<\/jats:p>","DOI":"10.1177\/23743735251314620","type":"journal-article","created":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T05:27:57Z","timestamp":1737437277000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature"],"prefix":"10.1177","volume":"12","author":[{"given":"Lana","family":"Moayad","sequence":"first","affiliation":[{"name":"Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6588-3711","authenticated-orcid":false,"given":"Paige","family":"Alliston","sequence":"additional","affiliation":[{"name":"Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saira","family":"Khalid","sequence":"additional","affiliation":[{"name":"Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donna","family":"Fitzpatrick-Lewis","sequence":"additional","affiliation":[{"name":"Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hertzel C.","family":"Gerstein","sequence":"additional","affiliation":[{"name":"Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, Canada"},{"name":"Population Health Research Institute, Hamilton Health Sciences, McMaster University, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"Sherifali","sequence":"additional","affiliation":[{"name":"Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, Canada"},{"name":"Diabetes Care and Research Program, The Boris Clinic, McMaster University Medical Centre, Hamilton Health Sciences, Hamilton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,1,21]]},"reference":[{"key":"bibr1-23743735251314620","unstructured":"Diabetes Canada.\n                      Diabetes In Canada: Backgrounder\n                      . Available At: https:\/\/www.Diabetes.Ca\/Advocacy\u2014Policies\/Advocacy-Reports\/National-And-Provincial-Backgrounders\/Diabetes-In-Canada. 2023."},{"key":"bibr2-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1016\/j.diabres.2019.107843"},{"key":"bibr3-23743735251314620","unstructured":"World Health Organization.\n                      Existence of a diabetes registry\n                      . Available at: https:\/\/www.Who.Int\/Data\/Gho\/Data\/Indicators\/Indicator-Details\/Gho\/Existence-Of-A-Diabetes-Registry. 2021."},{"key":"bibr4-23743735251314620","unstructured":"Registries For Evaluating Patient Outcomes. In: Gliklich RE, Dreyer NA and Leavy MB (Eds)\n                      Registries for evaluating patient outcomes: a user's guide [Internet]\n                      . 3rd edition. Rockville (MD): Agency for Healthcare Research and Quality (US). 2014."},{"key":"bibr5-23743735251314620","volume-title":"Registries for evaluating patient outcomes: a user's guide","author":"L&amp;M Policy Research","edition":"4"},{"key":"bibr6-23743735251314620","unstructured":"National Center For Advancing Translational Sciences (NCATS).\n                      Patient registries - toolkit\n                      . Available at: https:\/\/Toolkit.Ncats.Nih.Gov\/Module\/Discovery\/Starting-A-Patient-Registry-Natural-History-Study-Database\/Patient-Registries\/ (Accessed November 25). (N.D.)."},{"key":"bibr7-23743735251314620","volume":"27","author":"Parums D","year":"2021","journal-title":"Med Sci Monit"},{"key":"bibr8-23743735251314620","unstructured":"Integrating diabetes evidence into practice: challenges and opportunities to bridge the gaps. 2017."},{"key":"bibr9-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1007\/s00592-020-01576-8"},{"key":"bibr10-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1113631"},{"key":"bibr11-23743735251314620","unstructured":"Diabetes Australia.\n                      About the NDSS\n                      . Available at: https:\/\/www.Ndss.Com.Au\/About-The-Ndss\/ (N.D.)."},{"key":"bibr12-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1016\/j.jand.2015.05.012"},{"issue":"1","key":"bibr13-23743735251314620","volume":"42","author":"Sherifali D","year":"2018","journal-title":"Can J Diabetes"},{"key":"bibr14-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1186\/2251-6581-12-14"},{"key":"bibr15-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0272133"},{"key":"bibr16-23743735251314620","doi-asserted-by":"publisher","DOI":"10.2337\/dc23-1001"},{"key":"bibr17-23743735251314620","unstructured":"Nationella Diabetesregistret.\n                      About Ndr\n                      . Available at: https:\/\/www.Ndr.Nu\/#\/English. (N.D.)."},{"key":"bibr18-23743735251314620","unstructured":"Abelson J. Patient engagement and Canada\u2019s SPOR initiative: A resource guide for research teams and networks. 2015."},{"key":"bibr19-23743735251314620","unstructured":"Boivin A. Advancing the science of patient engagement in research. Presentation to the Ontario Support Unit Patient Engagement Roundtable. 2015."},{"key":"bibr20-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1177\/0162243904271724"},{"key":"bibr21-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1177\/0145721719882007"},{"key":"bibr22-23743735251314620","doi-asserted-by":"publisher","DOI":"10.2174\/1573399811666150421123448"},{"key":"bibr23-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2020.10.009"},{"key":"bibr24-23743735251314620","doi-asserted-by":"publisher","DOI":"10.7326\/M18-0850"},{"key":"bibr25-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1111\/1753-0407.13340"},{"key":"bibr26-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzr051"},{"key":"bibr27-23743735251314620","doi-asserted-by":"publisher","DOI":"10.2337\/diacare.25.1.9"},{"key":"bibr28-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-018-5148-8"},{"key":"bibr29-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1001\/archinternmed.2011.70"},{"key":"bibr30-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcjd.2022.05.010"},{"key":"bibr31-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1089\/dia.2006.0058"},{"issue":"12","key":"bibr32-23743735251314620","first-page":"1327","volume":"99","author":"Vachon G","year":"2007","journal-title":"J Natl Med Assoc."},{"key":"bibr33-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1002\/edn.178"},{"key":"bibr34-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1038\/s41597-020-0401-2"},{"key":"bibr35-23743735251314620","doi-asserted-by":"publisher","DOI":"10.1016\/j.diabres.2005.03.024"}],"container-title":["Journal of Patient Experience"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/23743735251314620","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/23743735251314620","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/23743735251314620","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T00:37:25Z","timestamp":1777509445000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/23743735251314620"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1]]},"references-count":35,"alternative-id":["10.1177\/23743735251314620"],"URL":"https:\/\/doi.org\/10.1177\/23743735251314620","relation":{},"ISSN":["2374-3735","2374-3743"],"issn-type":[{"value":"2374-3735","type":"print"},{"value":"2374-3743","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1]]},"article-number":"23743735251314620"}}