Dáil Éireann Debate, Wednesday - 29 September 2010
696 Deputy Joe McHugh asked the Minister for Health and Children further to comments made in the Dáil (details supplied) by Minister John Moloney on 21 May 2009, the actions taken by her, the Health Service Executive and the Health Research Board since that Dáil debate; her plans and those of the Health Service Executive in this context; and if she will make a statement on the matter. [32930/10]
Amharc ar fhreagraThe Health Research Board (HRB) is the statutory agency for funding projects in all areas of health research. The HRB has worked closely with Duchenne Ireland and in March 2009 met with representatives from Duchenne Ireland to discuss the joint HRB/medical research charities group funding programme for medical research projects. I understand that two research applications supported by Duchenne Ireland were successful in obtaining funding in the most recent call for proposals under the scheme.
Following the Dáil Debate regarding muscular dystrophy in 2009 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.
There are a number of barriers and obstacles which exist in relation to the proposals in relation to Duchenne muscular dystrophy research, standards of care and the inclusion of Irish boys in international clinical trials, The most significant being the identification of a clinical lead in Ireland. However, in an effort to progress the issues, the Department contacted the TREAT — NMD trial site in Newcastle, England and Minister Harney met with Duchenne Ireland and Muscular Dystrophy Ireland on the 3rd June this year. The meeting also included representatives from the HSE, HRB and a consultant paediatric neurologist.
The Department is now awaiting a written proposal in relation to the development of a clinical trial site in Ireland and/or linking with European trials in the assessment and treatment of neuromuscular diseases.
The Department has also asked the HSE's clinical care directorate to consider the standards of care protocol in treating Duchenne muscular dystrophy in developing paediatric models of care for Ireland.
