UK study checks if routine newborn screening can catch rare muscle disease early

NCT ID NCT05481164

First seen Nov 18, 2025 · Last updated May 06, 2026 · Updated 20 times

Summary

This study looked at whether adding a genetic test for spinal muscular atrophy (SMA) to the standard newborn blood spot screening is practical and accepted by families in the UK. Over 33,000 newborns were screened using leftover blood from their routine Guthrie card. The goal was to see how many parents agreed to the test and how reliably it identified babies with SMA, so they could get early treatment before symptoms appear.

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Contacts and locations

Locations

  • Buckinghamshire HealthCare Trust

    Buckingham, United Kingdom

  • Dorset County Hospital (DCHFT)

    Dorchester, DT1 2JY, United Kingdom

  • Milton Keynes University Hospital NHS Foundation Trust

    Milton Keynes, United Kingdom

  • Princess Anne Hospital

    Southampton, United Kingdom

  • Queen Alexandra Hospital

    Portsmouth, United Kingdom

  • Royal Berkshire NHS Foundation Trust

    Reading, United Kingdom

  • Salisbury District Hospital

    Salisbury, United Kingdom

  • St Mary's Maternity Hospital

    Poole, United Kingdom

  • University of Oxford UK

    Oxford, United Kingdom

Conditions

Explore the condition pages connected to this study.