British Myology Society Second Annual Meeting September 2010 St Anne’s College, Oxford

1. British Myology Society Second Annual Meeting September 2010 St Anne’s College, Oxford Michael Hanna MSG Beaver Hollow, 2010 1

2. Specific aims UK multidisicplinary professional body • Agreeing best practice and standards of care eg Diagnostic criteria Commissioning • Agreeing standards of training clinical myology/ pathology • Promote translational research • Adult and paediatric networks • Promote patient registries • Promote clinical trials

3. BRITISH MYOLOGY SOCIETY Independent professional body of neuromuscular experts Consultant membership nm specialists Adult and paed neurologists Geneticists Pathologists Therapists (CE’s) Trainee membership Overseas membership

4. Key partners with the BMS MRC centre for neuromuscular disease Patient organisations MDC BPNS TREATNMD NHS- NCG coordinated network diagnostic centres for rare nm diseases

5. CLINICAL TRIALS UK Clinical trials development/support North and South Trial Centres UK Trial centre Network Patient Registries UK Clinical Networks Bio-stats Trial design Outcomes research Trial strategy British Myology Society/British Peripheral Nerve society/TREAT-NMD Patient Organizations and Charities

6. Clinical Trials Centres NEWCASTLE LONDON

10. 71 Delegates Oxford

11. Commissioned national nm services • Neuromuscular one year fellowship • National Neuromuscular Database

12. Nationally NHS NCG nm Centres NEWCASTLE OXFORD LONDON

13. NaNDa Project Management Group (PMJ) TREAT-NMD MDC BMS North Star DMD SMArtNet SMA IBM Cong MD & myopathy Clinical Dev PMG Clinical Dev PMG Clinical Dev PMG Clinical Dev PMG Clinical Networks National nm database structure CERTUS Database dev, hosting