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Spinal Muscular Atrophy (SMA) Research and Clinical Hub UK
| Sponsor / Funder | Great Ormond Street Hospital |
| Funder | UK SMA charity: SMA TRUST |
| CI | Professor Francesco Muntoni |
| Sites | Newcastle, London GOSH |
| Contact details | ich.neuromusculartrials@ucl.ac.uk |
| More information |
This is a national clinical and research network for patients with SMA.
Primary objective
To provide a national agreement on
- clinical assessment
- physiotherapy assessment
- and treatment for SMA patients
We propose designing, piloting and expanding an electronic database. The database will streamline the collection of data for SMA patients.
The UK SMA database, a unique infrastructure, will be developed at GOSH and Newcastle. It will soon be built up and accessible to specialist centres treating SMA patients across the UK.