Written answers

Tuesday, 15 February 2022

Department of Health

Disease Management

Photo of Marc Ó CathasaighMarc Ó Cathasaigh (Waterford, Green Party)
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89. To ask the Minister for Health the status of development of disease-specific registries as part of Ireland’s health information strategy; if work has commenced on registries for any diseases; when the first registry will be launched; and if he will make a statement on the matter. [7694/22]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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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.

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