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 |
| Published: |
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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| Summary: | 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. |
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| ISSN: | 2374-3743 |