Jimmy Devins (Sligo-North Leitrim, Fianna Fail)

I thank the Deputy for raising the issue which I will take on behalf of my colleague, the Minister for Health and Children, Deputy Mary Harney.

As the Deputy is aware, officials from the Department of Health and Children and myself met with representatives of Muscular Dystrophy Ireland in October of last year and discussed at some length the issue raised by the Deputy. I commend the Deputy on the dedication he has shown regarding this issue. At that meeting a presentation was made by Muscular Dystrophy Ireland on seeking funding towards a proposed trial of IV Exon skipping therapy by the MDEX consortium in the United Kingdom.

I issued a letter to the director of Muscular Dystrophy Ireland last week — I apologise to the Deputy if he received it only today but it was issued from my Department last Friday — outlining the Department's position on funding research trials into Duchenne muscular dystrophy in the UK.

I assure the Deputy that I am very aware of the situation for these families. I am aware also of their hopes regarding a proposed trial of IV Exon skipping therapy by the MDEX consortium in the UK. This trial is one of a number of related trials on different Exon skipping therapies being planned in different centres.

It is very positive that Muscular Dystrophy Ireland has secured access for Irish children to the Duchenne muscular dystrophy registry in the UK in order that they can be considered for inclusion in the first systemic trial of this treatment.

Regarding the request for direct Irish Government funding for the trial, unfortunately there is no mechanism or budget for Government funding of UK health research. I have spent some time since the meeting in October investigating the options after meeting with Muscular Dystrophy Ireland. As explained at that meeting, the consortium could apply to the Health Research Board for joint funding for the proposed trial but it would have to compete with all other proposals being received by the Health Research Board.

The Department of Health and Children cannot directly fund UK or Irish research. I assure the Deputy we have examined every possible alternative in this regard. We can only recommend that the researchers apply to the Health Research Board. I would be hopeful, however, that the much larger research funding bodies in the UK will fund this research if they are convinced of the merits of the trial.

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