European network launched to aid muscle disease patients

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European network launched to aid muscle disease patients

http://www.news-medical.net/?id=21183

Some of the world's leading doctors and scientists will join

together in a multi-million pound international network aimed at

improving treatment and finding cures for thousands of patients with

debilitating neuromuscular diseases.

Researchers at Newcastle University are leading the £6.7m (10m

euros) 'network of excellence', the first of its kind, which has

been funded by the European Union following extensive lobbying from

the European Organisation for Rare Diseases (EURORDIS), the French

Muscular Dystrophy Association (AFM) and other patient groups and

clinicians.

Called TREAT-NMD (stands for Translational Research in Europe -

Assessment and Treatment of Neuromuscular Diseases), the network

brings together 21 partner organisations, including doctors,

researchers, charities and public companies already working on

neuromuscular diseases, based throughout 11 European countries. The

funding lasts for five years although network leaders hope it will

survive beyond this timescale and expand to include other

international partners.

Neuromuscular disorders affect around 200,000 people in Europe and

up to 30,000 people in the UK. 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.

TREAT-NMD will encourage experts in this field to work together to

share good practice and to improve global standards of care.

Scientists will work closely with doctors to test and apply new

research into these inherited disorders, in order to develop new

ways of looking after patients with conditions like Duchenne

Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA).

Close links with drug companies will also be further developed to

advance potential treatments and cures. Patients and patient

charities will be heavily involved at all levels.

Other special features of TREAT-NMD include the development of 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.

Kate Bushby and Volker Straub, Professors of Neuromuscular Genetics

with Newcastle University's Institute of Human Genetics, who are

based at Newcastle's Centre for Life, are co-ordinating TREAT-NMD.

They are also practising doctors with the Newcastle upon Tyne

Hospitals NHS Foundation Trust.

The network is launched 20 years after scientists found the gene

that caused DMD but as yet no cure has been found.

Prof Bushby said: " At the moment no cures exist for these incredibly

disabling diseases so patients receive treatment from doctors like

me and Professor Straub to manage their condition in the best way.

" Standards of care and treatment differ greatly throughout the world

but the level of treatment can make a great difference in terms of

quality of life and life expectancy. "

Prof Straub said: " It is a great honour that Newcastle was chosen to

lead this international network of excellence. The application would

not have been successful without the fantastic support we received

from all of our European partners. The French Muscular Dystrophy

Association was particularly helpful as they provided us with funds

for the application process. "

Domenico Marchetti, who had a son affected by Spinal Muscular

Atrophy (SMA) and is president of SMA Europe, said: " SMA is the main

genetic cause of death for children under the age of two. Tens of

thousands of families, all over the world, fight every day with this

terrible disease. TREAT-NMD is a great step forward along the path

to improve children's quality of life now, and, tomorrow, to find a

cure. "

http://www.ncl.ac.uk