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What do families of kids with SMA type 1 go through? new study asks parents directly.

NCT ID NCT07596277

Not yet recruiting Knowledge-focused Sponsor: Guy's and St Thomas' NHS Foundation Trust Source: ClinicalTrials.gov ↗

First seen May 30, 2026 · Last updated Jun 14, 2026 · Updated 4 times

Summary

This study will interview 15 parents or guardians of children with spinal muscular atrophy type 1 (SMA1) to learn about their daily experiences with feeding and communication. Even though newer medicines have improved survival, how they affect swallowing and speech is still unclear. The goal is to capture real-life challenges and needs to help shape better support and care.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • GSTT Evelina Neurosciences

    London, SE1 7EU, United Kingdom

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.

SPINAL MUSCULAR ATROPHY 1

Conditions inferred from the trial description

These were inferred from the trial's summary, not listed by the trial registrant.

SPINAL MUSCULAR ATROPHY TYPE 1