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 Laser activated gold pyramids could deliver drugs, DNA into cells without harm
24.03.2017 | Harvard John A. Paulson School of Engineering and Applied Sciences

nachricht What does congenital Zika syndrome look like?
24.03.2017 | University of California - San Diego

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: Giant Magnetic Fields in the Universe

Astronomers from Bonn and Tautenburg in Thuringia (Germany) used the 100-m radio telescope at Effelsberg to observe several galaxy clusters. At the edges of these large accumulations of dark matter, stellar systems (galaxies), hot gas, and charged particles, they found magnetic fields that are exceptionally ordered over distances of many million light years. This makes them the most extended magnetic fields in the universe known so far.

The results will be published on March 22 in the journal „Astronomy & Astrophysics“.

Galaxy clusters are the largest gravitationally bound structures in the universe. With a typical extent of about 10 million light years, i.e. 100 times the...

Im Focus: Tracing down linear ubiquitination

Researchers at the Goethe University Frankfurt, together with partners from the University of Tübingen in Germany and Queen Mary University as well as Francis Crick Institute from London (UK) have developed a novel technology to decipher the secret ubiquitin code.

Ubiquitin is a small protein that can be linked to other cellular proteins, thereby controlling and modulating their functions. The attachment occurs in many...

Im Focus: Perovskite edges can be tuned for optoelectronic performance

Layered 2D material improves efficiency for solar cells and LEDs

In the eternal search for next generation high-efficiency solar cells and LEDs, scientists at Los Alamos National Laboratory and their partners are creating...

Im Focus: Polymer-coated silicon nanosheets as alternative to graphene: A perfect team for nanoelectronics

Silicon nanosheets are thin, two-dimensional layers with exceptional optoelectronic properties very similar to those of graphene. Albeit, the nanosheets are less stable. Now researchers at the Technical University of Munich (TUM) have, for the first time ever, produced a composite material combining silicon nanosheets and a polymer that is both UV-resistant and easy to process. This brings the scientists a significant step closer to industrial applications like flexible displays and photosensors.

Silicon nanosheets are thin, two-dimensional layers with exceptional optoelectronic properties very similar to those of graphene. Albeit, the nanosheets are...

Im Focus: Researchers Imitate Molecular Crowding in Cells

Enzymes behave differently in a test tube compared with the molecular scrum of a living cell. Chemists from the University of Basel have now been able to simulate these confined natural conditions in artificial vesicles for the first time. As reported in the academic journal Small, the results are offering better insight into the development of nanoreactors and artificial organelles.

Enzymes behave differently in a test tube compared with the molecular scrum of a living cell. Chemists from the University of Basel have now been able to...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

International Land Use Symposium ILUS 2017: Call for Abstracts and Registration open

20.03.2017 | Event News

CONNECT 2017: International congress on connective tissue

14.03.2017 | Event News

ICTM Conference: Turbine Construction between Big Data and Additive Manufacturing

07.03.2017 | Event News

 
Latest News

Argon is not the 'dope' for metallic hydrogen

24.03.2017 | Materials Sciences

Astronomers find unexpected, dust-obscured star formation in distant galaxy

24.03.2017 | Physics and Astronomy

Gravitational wave kicks monster black hole out of galactic core

24.03.2017 | Physics and Astronomy

VideoLinks
B2B-VideoLinks
More VideoLinks >>>