Global network launched to aid muscle disease patients

New GBP 6.7 million international network launched to tackle neuromuscular disorders - News

By Laura Gallagher
Thursday 30 November 2006

Improving treatment for thousands of patients with debilitating neuromuscular diseases is the aim of a GBP 6.7 million international network launched today.

The network, which includes UK partners from Imperial College London and the University of Newcastle, will encourage experts in the neuromuscular disorder field to work together to share good practice and improve global standards of care.

Known as TREAT-NMD, this new 'network of excellence' is the first of its kind and has been funded by the European Union following extensive lobbying from patient groups. TREAT-NMD stands for Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases and the network will be led by the University of Newcastle.

Neuromuscular disorders affect around 30,000 people in the UK and 200,000 people in Europe. The term refers to a large group of conditions that affect either the muscles themselves or the nerves controlling the muscles. Most conditions result in chronic long term disability and early death may eventually result from respiratory failure.

Scientists will work closely with doctors to test and apply new research into these disorders, in order to develop new ways of looking after patients with inherited conditions like Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA).

TREAT-NMD will heavily involve patients and patient charities and will further develop links with drug companies to advance potential treatments.

The network will also create a clinical trials co-ordination centre in Germany, which will provide advice on how to conduct trials of the highest standard, and the option of top-level training for network members.

Professor Francesco Muntoni , part of the network from the Department of Paediatrics at Imperial College London, said: "Neuromuscular disorders cause disability and have a devastating effect on the duration and quality of people’s lives. Over the last few years we have found out a lot about the genetic defects that cause these disorders, but as of yet we have not been able to translate our findings into real benefits for the patients. Through the new network, scientists from across the world can come together and share their expertise so that we can develop much better therapies and improve the outlook for people with neuromuscular disorders."

TREAT-NMD brings together 21 partner organisations, including doctors, researchers, charities and private companies. These organisations are based in the UK, Spain, France, Germany, Switzerland, Belgium, Holland, Italy, Finland, Sweden, Hungary. The funding lasts for five years, although network leaders hope it will survive beyond this timescale and expand to include other international partners.

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