Study assesses palliative care for babies with rare muscle disease

NCT ID NCT01862042

First seen Nov 01, 2025 · Last updated Jun 10, 2026 · Updated 32 times

Summary

This study looked at how well supportive and palliative care works for infants under 1 year old with spinal muscular atrophy (SMA) type 1, a severe muscle-weakening disease. Researchers measured the use of oxygen therapy and breathing machines, and also interviewed parents about their challenges and satisfaction with care. The goal was to improve quality of life for these babies and their families.

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Contacts and locations

Locations

  • Necker Hospital

    Paris, 75015, France

Conditions

Explore the condition pages connected to this study.