UK SMA Patient Registry activities

Standards of Care in the UK

In 2007 an International Standards of Care Consensus was reached for children, young people and adults with SMA. This was published and has since been available to medical teams and people affected by SMA and their families. In February 2016, clinical researchers and patient representatives from Europe and US met in Naarden, the Netherlands, to work on a major review of the International Standards of Care for SMA. A lay summary of this meeting is available on the workshop organiser’s website here.  

It was important that the reviewers understood the day-to-day care actually experienced by individuals with SMA so that they could use this information to inform their creation of new standards. At the beginning of 2016, the registry sent out a survey to registry participants in which individuals with SMA and their families were asked about their experiences of care in the UK. Some of the initial findings from the survey were presented at the meeting in February. The full results are published here