Study examines how to better support families of infants with fatal muscle disease
NCT ID NCT01862042
First seen Jun 26, 2026 · Last updated Jun 26, 2026 · Updated 1 time
Summary
This study looked at the quality of supportive and palliative care for infants under one year old with spinal muscular atrophy (SMA) type 1, a severe genetic muscle disease. Researchers followed 39 infants and asked families to keep a diary about care. One year after the child's death, parents completed a questionnaire with a psychologist to share their experiences and challenges. The goal was to understand what works well and what could be improved in end-of-life care for these infants.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this study could help improve how doctors and families manage care for infants with SMA type 1, making the experience more comfortable and supportive.
- What could go wrong
- This is a small, observational study with only 39 participants and no new treatment being tested. Results may not apply to all patients or change standard care.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Necker Hospital
Paris, 75015, France
More trials for these conditions
Other studies related to the condition(s) this trial covers.