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Page last updated: June 2024

This research study is to see if newborns in the UK can be screened for SMA and therefore start treatment before symptoms develop. The study findings will help with the National Screening Committee’s decision on whether to include SMA as part of the standard UK Newborn Screening.

Who can join the study?

If you are 18 weeks pregnant or your baby is less that 28 days old, you may apply to join this study. Your care must be via one of the following centres:

Map showing where the centres are in the newborn screening pilot study.Oxford – Thames Valley

  • Oxford Trust: John Radcliffe and Horton General Hospital
  • Buckinghamshire Trust: Stoke Mandeville Hospital and Wycombe Birthing Centre
  • Berkshire Trust: Royal Berkshire Hospital
  • Milton Keynes Trust: Milton Keynes University Hospital


  • Princess Anne Hospital (Southampton)
  • Queen Alexandra Hospital (Portsmouth)
  • Salisbury District Hospital
  • University Hospitals Dorset (Poole)

How many babies have been screened so far?

By 3rd June 2024, the study had recruited recruited 26,168 participants to the study and screened 22,559 babies. (The difference is that not all babies are born yet.)

How do I apply for my baby to join the study?

Scan this QR code to access a contact request form:

QR code to find out more about the newborn screening pilot study.

Or email:

Unfortunately, there are currently no other newborn screening for SMA services available in the UK. We do not know of any private newborn screening services.

Related Information:

Advocacy for Newborn Screening in the UK >

Family Planning For Couples Affected By 5q SMA – our information guide for couples thinking about having children or who are currently pregnant:

  • who have had a child with 5q SMA
  • who know that one or both of them are carriers of 5q SMA
  • where one or both of them have 5q SMA
  • where someone in one or both of their extended families has 5q SMA, but they do not know if they are carriers of the condition.