Andrew Doyle (Wicklow, Fine Gael)

The point is that the children going to the UK for trials encounter many challenges and this is not acceptable on an ongoing basis. There are three key areas: research, a proper register and standards of care. Duchenne Ireland contends that only a fraction of boys with the condition are on the register. What is a needed is a dedicated neurologist to drive the updating of the register and to establish the standards. The Lancet journal will next January or February list a register of standards for all countries with regard to the research and trials that have been carried out. This register is what will form opinion. GlaxoSmithKline has already signed a deal to put a product on the market.

If we do not have a proper register for the children of this country, they will miss out. It is estimated there is a core of 150 to 200 boys with the condition. I ask the Minister in the first instance to dedicate a neurologist from within the current core staff of the HSE to drive this forward.

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