John Moloney (Laois-Offaly, Fianna Fail)

Following the Dáil debate regarding muscular dystrophy earlier this year, I met with Duchenne Ireland and discussed a range of issues, including research, clinical trials, 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 receiving detailed consideration at the highest levels in the Department. However, I must point out that while the Department is working through the various issues raised by Duchenne Ireland, it may not be possible to come to a full resolution of all the issues that are of concern to it.

The Duchenne muscular dystrophy registry is a database for patients diagnosed with Duchenne or Becker's muscular dystrophy. It is hosted by Action Duchenne in the UK and is promoted by Muscular Dystrophy Ireland and Duchenne Ireland. It is very positive that access for Irish children to the registry has been secured so that they can be considered for inclusion in trials. While the use of registries as a tool to identify patients for clinical trials is gathering momentum, the Duchenne muscular dystrophy registry is a voluntary database and, as such, it is a matter for each individual to include themselves on the registry.

I am not aware of any requests made to the Health Service Executive for assistance to fund Irish Duchenne muscular dystrophy patients travelling abroad for care and treatment in the UK.

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