Written answers

Tuesday, 10 July 2018

Department of Health

Health Screening Programmes

Photo of Eoin Ó BroinEoin Ó Broin (Dublin Mid West, Sinn Fein)
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404. To ask the Minister for Health his policy in regard to sickle cell disease; his plans to fund a national screening programme to detect children affected by the disease; his plans to found cross-border access to bone marrow transplants within the EU for those suffering from sickle cell disease; if his Department and the HSE are seeking to learn from the experience of their counterparts in the UK who have more experience on the matter; and if he will meet representatives of organisations (details supplied) to discuss the way in which to progress the matter. [30082/18]

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
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There are over 600 people with sickle cell disease in Ireland and over two thirds of those with the disease are under 18 years of age. Majority of those with the disease are seen in the two centres of expertise - Our Lady's Children Hospital in Crumlin and St. James's Hospital. To ensure an early diagnosis and prevent early deaths, the team at Crumlin, over many years, organised a neo-natal screening in the majority of maternity hospitals.

Sickle cell disease, among many other rare diseases, is addressed as part of the generic policy framework in the National Rare disease plan which was published in 2014. The scope of the plan is broad given that there are 8,000 rare diseases approximately affecting millions of EU citizens; and consequently, there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so rare.

One of the achievements of the Rare Disease Plan was to encourage designated centres of expertise to participate in European Reference Networks (ERNs) for Rare Diseases. ERNs are European networks connecting health care providers and centres of expertise so that international expertise on specific rare diseases may be pooled together for the benefit of patients. Any centre applying for membership of an ERN must have strategies in place to ensure that care is patient-centred; that patient' rights and preferences are respected; and must show a research component to their work.

The recommendations in the national plan related to empowering and protecting patients and carers, and research on rare diseases will be fulfilled in part through this process. It is expected that ERNs will have a major structuring effect by linking thematic expert centres across the EU.

With the encouragement of the National Clinical Programme for Rare Diseases and the Department of Health, five centres of expertise were designated in June 2016 during the first round of calls from the European Commission for participation in European Reference Networks. Three of these designated centres applied for membership of ERNs and two were approved.

The issue of rare diseases and of the creation of an all-island patient register has been raised in the context of on-going discussions at North-South meetings. It is also anticipated that the Model of Care for Rare Diseases will set out recommendations for rare disease registries. This model of care is in development by the National Clinical Programme for Rare Diseases. At the EU level, the Joint Research Centre is developing a joint European Platform on Rare Disease Registration which will promote EU level standards for data collection and contribute to the development of rare disease registries across the EU.

As Minister I consider meeting any organisation that requests to do so. However due to busy parliamentary and other business it is not always possible to meet all representative groups that contact my office.

In respect of the other issues raised, I have asked the HSE to respond directly to the Deputy.

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