New Joint Duchenne Funding Project
23 Dec 2015
We are delighted to announce that we have committed to jointly fund 16 clinical posts at Neuromuscular centres across the UK. Together with seven other patient led Duchenne and Muscular Dystophy charities, the contribution of £1.2 million responds to the discovery by Joining Jack and Duchenne Children's Trust that trials were being turned away from major hospitals and centres of medical excellence due to a lack of funding for key posts.
The funding has been put together in just six short months, after an unprecedented meeting in Newcastle in July 2015 called the Newcastle Plan - where patient organisations, clinicians, representatives from industry and from the NHS and the National Institute of Health Research, gathered together to address the lack of capacity at centres of excellence and other neuromuscular centres in the UK.
The posts will be filled at Great Ormond Street Hospital in London, The John Walton Muscular Dystrophy Research Centre at Newcastle University and Alder Hey Children's Hospital in Liverpool, to help support clinical trial development for Duchenne Muscular Dystrophy.
Harrison's Fund are proud to be funding £236,000 of the total project cost . Alex, our CEO and Harrison's Daddy said: "Every day parents, like myself, have to hear the news that their child may not get to go on a clinical trial because of the lack of qualified staff. This is just not acceptable. Every second counts to families whose children are suffering from this disease and we cannot afford to wait any longer.
"This money brings the thousands of children out there hope that the future may not be so bleak and a breakthrough could be just around the corner. Together our charities are making a monumental difference to the face of Duchenne and hopefully bringing us that one step closer to a cure. We are delighted to be part of this, and with the rest of those involved, help increase the clinical trial capacity in the UK."
The posts being funded are:
Clinical Research Associate Post
Clinical Research Nurse
Clerical Assistant Post
Clinical Trial Co-ordinator
GOSH - These post are being funded in collaboration with the NHS Trust and GOSH charity
Clinical Research Fellow
Clincal Research Fellow
Clinical Trial Co-ordinator
Data Manger - fully funded by GOSH
Professor of Neuromuscular
Senior Lecturer - Neuromuscular
The funding comes from the following charities:
Harrison's Fund: £236,000
Duchenne Children's Trust: £368,000
Joining Jack: £174,000
Action Duchenne £47,000
Duchenne Now: £22,500
Duchenne Research Fund: £30,000
Alex's Wish: £28,913
Professor Kate Bushby, from the John Walton Muscular Dystrophy Research Centre at Newcastle University added: "I am delighted that we have already received such tangible results in such a short space of time and hope that these posts will be the start of building real and sustained trial capacity, and will help to keep the UK at the forefront of exciting trials coming through for Duchenne Muscular Dystrophy."
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