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NHS England’s funding of nusinersen has been extended in large part in recognition of the difficulties there have been with data collection during the pandemic. It is essential that NICE is presented with as much data as possible about both patient reported outcomes (PROMS) and clinical outcomes when, towards the end of the MAA, it reviews whether to recommend continued funding of nusinersen.

PROMS data is being collected by the Patient Registry and is needed for all children and adults who have SMA, whatever treatment is being, or has been, given.

Find out more about how to add your PROMS data, here.