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

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

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

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

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

Clinical Trials Centres NEWCASTLE LONDON

71 Delegates Oxford

Commissioned national nm services Neuromuscular one year fellowship National Neuromuscular Database

Nationally NHS NCG nm Centres NEWCASTLE OXFORD LONDON

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