Policy and campaigning

Duchenne UK responds to the Life Sciences Industrial Strategy

Wednesday 30 August

The Government has today, Wednesday 30 August, published the Life Sciences Industrial Strategy’. The strategy sets out how the UK can exploit and rapidly grow its life sciences industry over the next decade.


The Strategy calls for further improvements in UK clinical trial capabilities, with a view supporting a 50% increase in clinical trials over the next five years. There should also be a growing proportion of ‘change of practice’ trials and trials with novel methodology.


Commenting on today’s announcement, Alex Johnson, Co-Founder and Chief Executive at Duchenne UK, said: “In setting out steps to improve clinical trials in the UK, the Life Sciences Strategy highlights that participation in clinical trials across the UK is patchy at best. For many people with rare or untreatable diseases, such as Duchenne muscular dystrophy (DMD), clinical trials offer the last line of hope. This means that children are being forced into yet another postcode lottery and denied potentially life-changing treatments.

“The Life Sciences Industrial Strategy rightly highlights the need for greater collaboration between industry and the NHS. Duchenne UK is utterly committed to improving clinical trials in Duchenne muscular dystrophy and have launched the DMD Hub. The Duchenne Muscular Dystrophy Hub will build a national network between industry and patients, extending the capacity of vital clinical trials in the UK.”




ENDS   -





About Duchenne Muscular Dystrophy (DMD)


  • There are around 2,500 boys affected by DMD in the UK and around 300,000 worldwide. It is classified as a rare disease
  • Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood, almost exclusively affecting boys
  • Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. There is no treatment or cure


About Duchenne UK


  • Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy (DMD). Duchenne UK has raised more than £5.5million in five years, and spent or committed £5million to DMD research projects – more than any other organization
  • Duchenne UK is leading the drive towards the efficient repurposing of existing medicines to bring new treatments for DMD
  • Duchenne UK believes that every child with Duchenne should be given the opportunity to access a clinical trial. Duchenne UK created the DMD Hub in 2016 to expand and develop the infrastructure for DMD trials in the UK and accelerate access to clinical studies for those who are interested in participating
  • The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell



Visit duchenneuk.org for more information or follow @DuchenneUK on Twitter.


Contact or more information and interview requests: Molly Hunt, Communications Manager: [email protected]


Published on 30 August 2017

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