Doctors map hidden toll of rare disease on adult bodies
NCT ID NCT05545774
Summary
This study aimed to understand how cystinosis, a rare genetic disorder, affects muscle strength, breathing, and swallowing in older teens and adults. Researchers followed 20 patients for one year, performing detailed physical tests to track changes in their abilities. The goal was to create a clearer picture of the disease's long-term effects to help guide future care.
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Contacts and locations
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Locations
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Department of Nephrology and Transplantation Centre de référence des Maladies Rénales Héréditaires de l'Enfant et de l'Adulte, Necker-Enfants Malades University Hospital, APHP
Paris, France
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Neurology Department, Raymond-Poincaré hospital, APHP
Garches, 92380, France
Conditions
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