Denis Naughten
Question:401. Deputy Denis Naughten asked the Minister for Health when he will extend the national patient disease registries to rare diseases; and if he will make a statement on the matter. [19026/22]
View answerThursday, 7 April 2022
Questions (401)
Written answers
I 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.