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:

Clinical Research Associate Post
Research Physiotherapist
Clinical Research Nurse
Clerical Assistant Post

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
Physiotherapy Assistant
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.”