Researchers track care for babies with fatal muscle disease
NCT ID NCT01862042
Summary
This study aimed to understand and improve the supportive and palliative care given to infants with the most severe form of spinal muscular atrophy (SMA type 1), a condition with no cure. Researchers followed 39 infants and their families, using diaries to record symptoms, treatments, and care decisions. The goal was to learn from families' experiences to create better care guidelines for this devastating illness.
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Contacts and locations
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Locations
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Necker Hospital
Paris, 75015, France
Conditions
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