Colm Burke
Question:392. Deputy Colm Burke asked the Minister for Health the actions that have been taken to develop rare disease data registries; and if he will make a statement on the matter. [7128/22]
View answerThursday, 10 February 2022
Questions (392, 393)
Colm Burke
Question:393. Deputy Colm Burke asked the Minister for Health the progress that has been made on an all-Ireland network of rare disease registries as called for in the National Rare Disease Plan for Ireland 2014-2018; and if he will make a statement on the matter. [7129/22]
View answerWritten answers
I propose to take Questions Nos. 392 and 393 together.
The Department is currently preparing a Memo for Government for approval-in-principal of a Health Information Bill, to improve the care people receive, their outcomes and the well-being of the population by ensuring high quality information is available to the public, health and social care professional, researchers and policymakers.
Included in the design of this Bill is a provision to enable the operation of disease-specific “virtual registries”, where information on disease diagnoses and treatment from healthcare providers are 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.
Question No. 393 answered with Question No. 392.