Dáil Éireann Debate, Thursday - 7 April 2022
397. Deputy Denis Naughten asked the Minister for Health when disease-specific virtual registries will become operational in the Irish healthcare system; the expected impact this will have on the monitoring of rare-disease prevalence in Ireland; and if he will make a statement on the matter. [19022/22]
View answerI propose to bring, in April, a Memorandum to Government for approval 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, 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.
