We, along with seven other patient organisations, have funded a total of 16 clinical posts 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. All to help support clinical trial development for Duchenne Muscular Dystrophy. 

The funding of £1.2m was put together in just 6 short months, after an unprecedented meeting in Newcastle in July 2015 - called the Newcastle Plan - where patient organisations, clinicians, representatives from industry, 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 new posts include research nurses, physiotherapists, co-ordinators and research fellows. These staff are needed immediately so that no further clinical trials are turned away from the UK.

The Newcastle meeting was held after Joining Jack and the Duchenne Children’s Trust discovered that leading clinics were turning trials away because of a lack of doctors and nurses. They helped to organise the Newcastle Plan in collaboration with Professor Kate Bushby, and the help of Treat-NMD, to address the issue head on.

Duchenne Children's Trust is investing £368,000 to co-fund 8 posts as part of the plan.

Professor Kate Bushby, from the John Walton Muscular Dystrophy Research Centre at Newcastle University said: “I 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."

 

Dr. William van Hoff, NIHR Clinical Research Network, National Specialty Lead for Children said:

 

“The National Institute for Health Research (NIHR) Clinical Research Network is delighted to have worked in partnership with patient organisations and hospital sites to quickly facilitate increased clinical support for neuromuscular trials. Building on the success of previous studies and utilising this national collaboration, the UK is well-placed to conduct more studies to improve treatments for children with these disorders and to increase the number of sites able to conduct this important research.”