Duchenne Ireland Parent Pushes for Irish Clinical Trial Site for Duchenne

by Admin 7/13/2010 3:43:00 PM

 

 
 

Last Monday, Duchenne was brought to the attention of the Irish Nation, as a parent of 2 boys with Duchenne appeared on the Morning Show on TV3 television.

The interview was to highlight the current work Duchenne Ireland are engaged in with the Government to get Ireland registered as a clinical trial site for International Clinical Trials in Duchene.

Duchenne Ireland, Muscular Dystrophy Ireland, the Central Remedial Clinic and the European Rare Disease Clinical Trial Center at University College Cork have engaged with the Government to bring clincal trials which are active internationally to Ireland, for Irish boys participation.

The interview reiterates the importance of the clinical trial center in Ireland for Duchenne, the need for Parents of boys with Duchenne to register their boys on the DMD Registry  and to ensure their sons receive care in accordance with the recently published Standards of Care for Duchenne Muscular Dystrophy (which also has a published Family Friendly Version).

 

 



Duchenne Ireland meets Government delegation to create Irish Clinical Trial Site for Duchenne

by Admin 6/15/2010 11:38:00 AM
 

On June 3rd, Duchenne Ireland arrived at Leinster Hose to meet with representatives of the Health Research Board HRB, Health Service Executive, Disability Authority, the Chief Medical Officer, Mary Harney, Irish Clinicians and MDI to discuss Making Ireland an internationl clinical trial site for Duchenne.

The meeting was very positive and centered around a proposal document that Duchenne Ireland had issued to all parties in relation to Ireland's participation in International Clinical Trials, Adoption of the recently published International Consensus Standards of Care for Duchenne and vital further research funding for Duchenne.

The proposal was well received and all parties agreed the objectives were justified and required and agreed to move to the next stage of making the proposal a reality in Ireland.



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