Bernard Durkan (Kildare North, Fine Gael)
Link to this: Individually | In context

Question 179: To ask the Minister for Health and Children if she has received correspondence from a person (details supplied) in County Kildare in relation to the urgent need for funding for clinical trials for children with duchenne muscular dystrophy; her plans to progress this matter in the short, medium and long term; and if she will make a statement on the matter. [15260/08]

Jimmy Devins (Sligo-North Leitrim, Fianna Fail)
Link to this: Individually | In context

I understand that my colleague, the Minister for Health and Children, has received correspondence from and on behalf of the person concerned, seeking funding for clinical trials for children with duchenne muscular dystrophy. I wish to assure the Deputy that I am very aware of the situation for the families with children suffering from this condition. I am also aware of their hopes regarding a proposed trial of IV Exon skipping therapy by the MDEX consortium in the United Kingdom. I believe that 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 United Kingdom so that they can be considered for inclusion in the first systematic trial of this treatment. With regard to the request for direct Irish Government funding for the trial, there is no mechanism or budget for Government funding to the U.K. health research.