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All-island rare disease register has been raised — DoH

A spokesperson for the Department of Health told the Medical Independent (MI) that officials had spoken to counterparts in Northern Ireland about an all-island patient register. The need for a register was raised at a conference on rare diseases held in Kilmainham, Dublin, in February.

“A National Rare Disease Plan for Ireland was launched by the Minister in July 2014,” a Department of Health spokesperson told MI.

“This is a generic policy framework for rare diseases. 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.

“The issue of rare diseases and of the creation of an all-island patient register has been raised in the context of ongoing discussions at North-South meetings.

“The determination of policy and practice in relation to registers in (the Republic of) Ireland is currently being examined in the context of a broader review of health information policy which is underway within the Department of Health.”

As previously reported in MI, Prof Ian Young, Chief Scientific Advisor to the Department of Health in Northern Ireland, told the rare disease conference in February that he hoped the UK’s departure from the EU would not have an impact on all-island services.

Prof Young discussed the Northern Ireland implementation plan for the UK Strategy for Rare Diseases.

He said the Northern Ireland plan “reflects our joint work on the island of Ireland, looking for opportunities for cross-border collaboration on rare diseases.  This is something which I trust will find a way of continuing post-Brexit and building on our current work.”

Prof Young said that work in the North is continuing towards building a patient register for rare diseases.

“That is something [where] we plan on working closely with our partners in the Republic of Ireland. I think there will be opportunities to make this an all-island register of rare diseases,” he told the conference.

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