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| CI | Prof Francesco Muntoni |
| Sites | London GOSH |
| Contact details | ich.neuromusculartrials@ucl.ac.uk |
More information is needed to help deliver the best care to children with congenital muscular dystrophy or congenital myopathy. The MD-Core database stores details on:
- diagnosis
- assessment
- disease progression
- medical interventions
- management of these patients
The data is collected and updated at every clinic visit.
Audit of this data within and across neuromuscular clinics in the UK will ensure best standard of care for this group of patients.