Do you have SMA, or do you care for someone who has SMA?
If so, you can support the community by helping researchers who are running a survey to better understand how individuals and carers experience SMA. The anonymous results may be used to help healthcare decision-makers understand the impact of SMA on people’s lives, and to understand the benefit of current and future disease modifying treatments. These results may also help to determine whether these treatments should be funded by the NHS, which will impact long-term access.
Who can take part?
People who have SMA Type 1, SMA Type 2 or People who care for someone with SMA Type 1,
SMA Type 3 SMA Type 2 or SMA Type 3
Children may need the help of an adult to complete the survey. People under 16 years of age and any person who is not capable of giving consent should complete the survey with the consent and in the presence of their parent or guardian.
You must be able to read and understand English and live in the UK. You must have access to the internet on a computer, as some parts of the survey are valid only on laptops/desktops. Please do not complete this survey on a mobile phone or tablet. Those who are unable to use a computer may need the support of a caregiver to complete the survey.
About the survey
The survey will ask questions about your physical and mental wellbeing and/or the physical and mental wellbeing of the person you care for (where applicable).
The survey will take 15-30 minutes to do. You will be able to leave the survey and come back to it later on, if you wish.
What will happen to the survey results?
The anonymous results will give healthcare decision-makers a better understanding of how SMA impacts people’s lives. This information may be used to understand the benefit of current and future disease modifying treatments. These results may also help to determine whether these treatments should be funded by the NHS, which will impact long-term access.
If you are interested
Click here to take part.
Take part
For more information
Please contact SMA UK for more information at office@smauk.org.uk
