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.