The John Walton Muscular Dystrophy Research Centre team has a long tradition of working to establish networks and collaborations with stakeholders from across the neuromuscular landscape, including within the (two-site) MRC Centre for Neuromuscular Diseases. We have active patient and public involvement programmes which include interactions and close working relationships with NHS services as well as many different patient organisations. As well as our role in the MRC Centre, many other networking and collaborative studies are run from the group.
Founded in 2007 and coordinated by Professors Bushby and Straub, TREAT-NMD is a network for the neuromuscular field, now run as the TREAT-NMD Alliance and chaired by Visiting Professor Annemieke Aartsma-Rus. The network provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible.
The John Walton Muscular Dystrophy Research Centre is experienced in the set-up and coordination of neuromuscular patient registries. A number of these are run from the centre, collecting data on over 1,500 neuromuscular patients. We also coordinate the global registries for DMD and SMA, accounting for over 15,000 genetically confirmed patients.
Many of the team at the John Walton Muscular Dystrophy Research Centre work in collaborative EU projects. We have had great success in securing funding for such projects over the years and since 2007 have participated in a funded portfolio of projects totalling 73 million EUR putting us firmly at the centre of the European neuromuscular and rare disease community.
MRC Centre for Neuromuscular Diseases at Newcastle
Institute of Genetic Medicine
+44 (0) 191 241 8621