Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Pioneering £6.7m European network launched to aid muscle disease patients

30.11.2006
SOME of the world’s leading doctors and scientists will today join together in a multi-million Euro network aimed at improving treatment and finding cures for thousands of patients with debilitating neuromuscular diseases.

Researchers at Newcastle University are leading the 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.”

Claire Jordan | alfa
Further information:
http://www.ncl.ac.uk/press.office

More articles from Health and Medicine:

nachricht Team discovers how bacteria exploit a chink in the body's armor
20.01.2017 | University of Illinois at Urbana-Champaign

nachricht Rabies viruses reveal wiring in transparent brains
19.01.2017 | Rheinische Friedrich-Wilhelms-Universität Bonn

All articles from Health and Medicine >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Traffic jam in empty space

New success for Konstanz physicists in studying the quantum vacuum

An important step towards a completely new experimental access to quantum physics has been made at University of Konstanz. The team of scientists headed by...

Im Focus: How gut bacteria can make us ill

HZI researchers decipher infection mechanisms of Yersinia and immune responses of the host

Yersiniae cause severe intestinal infections. Studies using Yersinia pseudotuberculosis as a model organism aim to elucidate the infection mechanisms of these...

Im Focus: Interfacial Superconductivity: Magnetic and superconducting order revealed simultaneously

Researchers from the University of Hamburg in Germany, in collaboration with colleagues from the University of Aarhus in Denmark, have synthesized a new superconducting material by growing a few layers of an antiferromagnetic transition-metal chalcogenide on a bismuth-based topological insulator, both being non-superconducting materials.

While superconductivity and magnetism are generally believed to be mutually exclusive, surprisingly, in this new material, superconducting correlations...

Im Focus: Studying fundamental particles in materials

Laser-driving of semimetals allows creating novel quasiparticle states within condensed matter systems and switching between different states on ultrafast time scales

Studying properties of fundamental particles in condensed matter systems is a promising approach to quantum field theory. Quasiparticles offer the opportunity...

Im Focus: Designing Architecture with Solar Building Envelopes

Among the general public, solar thermal energy is currently associated with dark blue, rectangular collectors on building roofs. Technologies are needed for aesthetically high quality architecture which offer the architect more room for manoeuvre when it comes to low- and plus-energy buildings. With the “ArKol” project, researchers at Fraunhofer ISE together with partners are currently developing two façade collectors for solar thermal energy generation, which permit a high degree of design flexibility: a strip collector for opaque façade sections and a solar thermal blind for transparent sections. The current state of the two developments will be presented at the BAU 2017 trade fair.

As part of the “ArKol – development of architecturally highly integrated façade collectors with heat pipes” project, Fraunhofer ISE together with its partners...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Sustainable Water use in Agriculture in Eastern Europe and Central Asia

19.01.2017 | Event News

12V, 48V, high-voltage – trends in E/E automotive architecture

10.01.2017 | Event News

2nd Conference on Non-Textual Information on 10 and 11 May 2017 in Hannover

09.01.2017 | Event News

 
Latest News

Helmholtz International Fellow Award for Sarah Amalia Teichmann

20.01.2017 | Awards Funding

An innovative high-performance material: biofibers made from green lacewing silk

20.01.2017 | Materials Sciences

Ion treatments for cardiac arrhythmia — Non-invasive alternative to catheter-based surgery

20.01.2017 | Life Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>