Diabetes Registries: Enabling high quality diabetes care
Diabetes registries, which collect, track, and analyse patient data on parameters ranging from clinical characteristics, risk factor control indicators, diabetes complications, and treatments, can become an essential tool for improving the quality of diabetes care and securing better outcomes for people with diabetes when integrated in the diabetes care system.
Registries enable evidence-based approach to diabetes management. They ensure quality control and better adherence to guidelines; track performance across clinics or regions and help identify the sources of variation in outcomes; and inform the delivery of care and treatments, which can reduce costly complications.
Yet despite all these benefits, registries are severely underutilised across Europe, with only a handful of countries with national diabetes registries. Given the growing burden of diabetes and the mounting costs to individuals, families, societies, all stakeholders to work together to advance the integration of registries in the diabetes care systems throughout Europe.
There are many political and logistical challenges to realising this vision, but the most important thing is to get registries started – depending on the country in regional settings at first, and then – when successful – to expand nationally.
The European Diabetes Forum, a representative group comprising healthcare professionals, researchers, industry associates, and people with diabetes, have compiled recommendations on building, maintaining, and utilising registries, outlining general principles and guidance on issues related to governance, data collection, and structure and scope. As always, it takes more than just a diabetes registry to improve care. Registries must be designed and used not just for data generation, but always with the goal of improving outcomes for people with diabetes.