In December 2015, eight patient organisations, who are working to help support clinical trial development for Duchenne muscular dystrophy, announced a total of £1.2million of investment, to fund a total of 16 clinical posts.

Today we are announcing that TEN of those SIXTEEN posts have now been recruited.

The posts are at Great Ormond Street Hospital NHS Foundation Trust in London (GOSH), The John Walton Muscular Dystrophy Research Centre at Newcastle University, University Hospitals Bristol NHS Foundation Trust and Alder Hey Children’s Hospital in Liverpool.

The funding was put together in just six months, after an unprecedented meeting in Newcastle in July 2015 - out of which came 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 for Duchenne research at neuromuscular centres in the UK. Together, Duchenne UK and Joining Jack contributed £542,121.00

NOW, only thirteen months after the workshop, there are already ten research-related posts in place all over the UK, making a difference to patients and their families TODAY.

These posts are funded by: Action Duchenne, Alex’s Wish, Duchenne Now, Duchenne Research Fund, Duchenne UK, Harrison’s Fund, Joining Jack, MDUK, GOSH and the Great Ormond Street Hospital Children’s Charity (GOSHCC).

Here are details of the posts so far:

The John Walton Muscular Dystrophy Research Centre at Newcastle University

• Clinical Trial Co-ordinator in post
• Research Physiotherapist appointed
• Administrative post, Nurse and Clinical Research Associate close to appointment

Alder Hey Children’s Hospital in Liverpool

• Research Physiotherapist in post
• Trials Co-ordinator and Clinical Fellow currently recruiting

Great Ormond Street Hospital NHS Foundation Trust in London

These posts are being funded in collaboration with GOSH and GOSHCC

• Two Clinical Research Fellows appointed
• Two Research Physiotherapists posts appointed
• Physiotherapy Assistant appointed
• Clinical Trial Co-ordinator appointed - with support from the family of Jacques Joubert
• A senior lecturer position will be advertised shortly
• Professor and Data Manager being recruited

University Hospitals Bristol NHS Foundation Trust

• Clinical Research Physiotherapist being recruited

Notes to Editors:

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.