Sláintecare Integration funding was allocated to the HSE in 2019 to design and procure a National Diabetes Registry demonstrator product and develop a full specification plan for a National Diabetes Registry. However, the support of public health and ICT was required and, due to COVID-19 pandemic, this work could not be continued and funding was returned.
The development of a national diabetes registry remains a priority. Following substantial increases in investment in eHealth, the national diabetes registry is now being considered as part of a wider review of Ireland’s health information strategy and will operate as a “virtual” registry.
Government approval was given in April to prepare the General Scheme of a Health Information Bill. It is envisaged that the Bill will include a provision to enable the operation of disease-specific “virtual” registries, including a virtual national diabetes registry, where information on disease diagnoses and treatment from healthcare providers is efficiently collated, combined and quality-checked from administrative records to create a database akin to an active registry for each disease. This will greatly improve the potential to monitor rare-disease prevalence in Ireland.
The General Scheme is currently being prepared for submission to Government in Q4 2022.