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. Patient Registries UK Clinical Networks Bio-stats Trial design Outcomes research Trial strategy UK Clinical trials development/support North and South Trial Centres UK Trial centre Network CLINICAL TRIALS 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. PMG TREAT-NMD MDC NaNDa Project Management Group (PMJ) Clinical Networks Cong MD & myopathy IBM SMArtNet SMA North Star DMD Clinical Dev PMGClinical Dev PMGClinical Dev PMGClinical Dev BMS National nm database structure CERTUS Database dev, hosting