Understanding Patient Registries for Diabetes: A Scoping Review of Published Literature.

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. 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. 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. 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.