SMA Newborn Screening Study
We are conducting a number of surveys and interviews to gather views on whether Spinal Muscular Atrophy should be added to the list of conditions that newborn babies are routinely screened for in the UK as part of the heel prick test (also known as the bloodspot, or Guthrie test).
This is because the UK National Screening Committee (UK NSC), the body who make recommendations to Government on screening policy, are currently reviewing whether to recommend newborn screening for SMA.
The results of this study will be presented (alongside other forms of evidence) to assist the UK NSC in their decision-making. Assessing the acceptability of a screening programme is one of the key criteria they look at.
We will be looking for participants from the general public, parents who are taking part in the SMA newborn screening pilot, people with SMA and their family members, and health care professionals.
For more information please contact
Who is conducting the study?
We are supported and guided by an expert reference group, made up of SMA patient and charity representatives, health care professionals, and members of the public.
We are also collaborating with researchers running the first UK pilot of Newborn Screening for SMA (led by Prof Laurent Servais at the University of Oxford), so that we can include the views of parents approached to take part in the screening pilot.
The study is funded by Novartis and has been approved by the Biomedical & Scientific Research Ethics Committee (BRSEC)
Click here for....Survey and information for parents taking part in SMA Screening Pilot
Survey to gather the views of parents who have been offered screening for SMA as part of the study “Population-based New-Born Screening of Spinal Muscular Atrophy to evaluate the uptake and feasibility in the UK context” being led by Prof Laurent Servais at Oxford University
Click here for...Survey link and information for members of the general public
Survey link and information for members of the public interested in doing an interview with us
Click here for...Survey link and information for people from the SMA Community
Survey link and information for members of the SMA community (people with SMA, family members of people with SMA) interested in doing an interview with us
Click here for... Survey and information for health care professionals
You can contact us at, or directly via or if you have any questions about the study.
If you would like to learn more about Spinal Muscular Atrophy, please visit smauk.org.ukLink opens in a new window