Around twenty international experts on SMA gathered at a workshop organised by the European Neuromuscular Centre (ENMC) to review the neurodevelopmental disorders observed in a number of children with SMA type I who are receiving or have received innovative therapy:
- these disorders affect cognition, social interactions, communication and behaviour;
- their frequency appears to be significant but remains difficult to quantify due to a lack of appropriate tools;
- the experts agreed to conduct a larger-scale survey to assess the extent of the phenomenon and its characteristics, and to identify risk factors.
The fact that these children have the most severe and earliest form of the disease is undoubtedly significant.
