The development of a national diabetes registry remains a priority. The National Diabetes Registry Demonstrator Project, funded through Sláintecare, was paused as key HSE staff were redeployed onto urgent on-going COVID-19 work. 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 this month 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.