Tuesday, 3 November 2009
Department of Health and Children
Duchenne Muscular Dystrophy
John Moloney (Minister of State, Department of Education and Science; Minister of State, Department of Health and Children; Minister of State, Department of Enterprise, Trade and Employment; Minister of State, Department of Justice, Equality and Law Reform; Laois-Offaly, Fianna Fail)
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I propose to take Questions Nos. 526 and 527 together.
Following the Dáil debate earlier this year, I met representatives of Duchenne Ireland to discuss the issues raised by the Deputies - research, clinical trials and the registry and standards of care for the treatment of boys with Duchenne muscular dystrophy. The issues raised by Duchenne Ireland are under active deliberation and are receiving detailed consideration at the highest levels in the Department of Health and Children. While the Department is working through the issues raised by Duchenne Ireland, it may not be possible to present a full resolution of all the issues. The Health Research Board is the statutory agency for funding projects in all areas of health research. The board, through the medical research charities group, recently approved a number of awards for research projects in the area of muscular dystrophy. I intend to respond to Duchenne Ireland as soon as possible.