Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature
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 re...
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| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2025-01-01
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| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/23743735251314620 |
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| author | Lana Moayad MD(C) Paige Alliston RD, MHSc Saira Khalid BScN Donna Fitzpatrick-Lewis MSW Hertzel C. Gerstein MD, MSc Diana Sherifali RN, PhD |
| author_facet | Lana Moayad MD(C) Paige Alliston RD, MHSc Saira Khalid BScN Donna Fitzpatrick-Lewis MSW Hertzel C. Gerstein MD, MSc Diana Sherifali RN, PhD |
| author_sort | Lana Moayad MD(C) |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-68d9749db7a44d6ea8bc692413b3c5d4 |
| institution | OA Journals |
| issn | 2374-3743 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj-art-68d9749db7a44d6ea8bc692413b3c5d42025-08-20T02:28:11ZengSAGE PublishingJournal of Patient Experience2374-37432025-01-011210.1177/23743735251314620Understanding Patient Registries for Diabetes: A Scoping Review of Published LiteratureLana Moayad MD(C)0Paige Alliston RD, MHSc1Saira Khalid BScN2Donna Fitzpatrick-Lewis MSW3Hertzel C. Gerstein MD, MSc4Diana Sherifali RN, PhD5 Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, Canada Faculty of Health Sciences, School of Nursing, , Hamilton, Canada Faculty of Health Sciences, School of Nursing, , Hamilton, Canada Faculty of Health Sciences, School of Nursing, , Hamilton, Canada Population Health Research Institute, Hamilton Health Sciences, , Hamilton, Canada Diabetes Care and Research Program, The Boris Clinic, Medical Centre, Hamilton Health Sciences, Hamilton, CanadaBackground: 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.https://doi.org/10.1177/23743735251314620 |
| spellingShingle | Lana Moayad MD(C) Paige Alliston RD, MHSc Saira Khalid BScN Donna Fitzpatrick-Lewis MSW Hertzel C. Gerstein MD, MSc Diana Sherifali RN, PhD Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature Journal of Patient Experience |
| title | Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature |
| title_full | Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature |
| title_fullStr | Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature |
| title_full_unstemmed | Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature |
| title_short | Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature |
| title_sort | understanding patient registries for diabetes a scoping review of published literature |
| url | https://doi.org/10.1177/23743735251314620 |
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