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Prof Felicity Boardman and Dr Corinna Clark – researchers at the University of Warwick – have launched this important new survey to gather the views of as many people in the SMA Community as possible. The responses will form part of the evidence provided to the UK National Screening Committee during their decision-making process on whether to recommend routine newborn screening for SMA across the UK.

The survey is open to any UK resident (over the age of 18 years) who either has SMA (of any Type) or is the family member of someone who has / had SMA. There are no restrictions on the relationship to family members (e.g., grandparents, aunts and uncles, cousins etc) so please share this link widely.

There is a short introduction to read, then the survey itself will take around 15 minutes to complete.


You can find out more and complete the survey here > 

Or if you have any questions, please email >