To be launched soon:

The Patient Registry will be a database of very basic patient information which will allow, when the time comes, efficient, fast tracked, local clinical trials of new treatments in Europe. The new registry, the first of it's kind for the congenital myopathies, will take the form of an electronic database that will:

• Encourage the development of more research.
• Provide neuromuscular researchers with specific patient information to assist their research.
• Help with new clinical trials in Europe.
• Enhance clinicians' and other health professionals' ability to efficiently deliver treatments for this disease.

The registry is currently being set up by the Myotubular Trust working in partnership with TREAT-NMD (Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases), a European neuromuscular network addressing the fragmentation currently hindering translational research for cutting edge therapies in rare neuromuscular diseases (NMD).

Dr Heinz Jungbluth, Senior Lecturer and Consultant Paediatric Neurologist in charge of the Neuromuscular Service at the Evelina Children’s Hospital, Guy's and St Thomas' NHS Foundation Trust, London is the co-ordinator of the new registry and has been liaising with other leading global academics in this field to agree the type of questions that are important for us to include on the registry and will assist with their research. The Myotubular Trust will be launching the registry imminently. Please watch this space for more information and so that you can join.