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The Newcastle Plan

Charities announce £1.2million investment in key clinical posts at leading Neuromuscular Centres for Duchenne Muscular Dystrophy 

Eight patient organisations, who are working to eradicate Duchenne Muscular Dystrophy, are funding 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, to help support clinical trial development for Duchenne Muscular Dystrophy.  

The funding has been 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 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. 

Duchenne Muscular Dystrophy is the most common genetic killer of children and young adults. Around 2,500 boys and young men are affected by this condition in the UK. Taking part in a clinical trial is seen by many parents as a chance to give their children access to potentially disease-modifying drugs. 

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. 

The posts that will be funded from the plan are as follows: 

NEWCASTLE

Clinical Research Associate Post 

Research Physiotherapist

Clinical Research Nurse

Clerical Assistant Post

 

ALDERHEY

Specialty Doctor

Research Physiotherapist

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

Physiotherapy Assistant

Research Physiotherapist

Research Physiotherapist

Clinical Trial Co-ordinator

Data Manger - fully funded by GOSH

Professor of Neuromuscular

Senior Lecturer - Neuromuscular

 

The funding is coming from the following charities:

Duchenne Children’s Trust: £368,000

MDUK: £361,000

Harrison’s Fund: £236,000

Joining Jack: £174,000

Action Duchenne: £47,000

Duchenne Now: £30,000

Duchenne Research Fund: £30,000

Alex’s Wish : £28,913 

Alex Johnson from Joining Jack said: “ We are delighted that so many patient organizations have come together and contributed to the Newcastle Plan to help boost trial capacity in the UK”

Emily Crossley from the Duchenne Children’s Trust said: “This is an exciting time for research into Duchenne Muscular Dystrophy, and we are delighted to be part of something that will help bring more and more clinical trials to the UK”. 

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

“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."

Dr. William van't 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.”

 

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