Patients' voices shape new tool to measure hidden toll of rare diseases
NCT ID NCT03569644
Summary
This study aimed to create a new questionnaire to measure how autoinflammatory diseases affect patients' quality of life. Researchers interviewed 39 patients and parents across different age groups to understand their daily challenges. The goal is to develop a tool that helps doctors better assess whether treatments are improving patients' overall well-being, not just controlling symptoms.
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Contacts and locations
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Locations
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CH André Mignot
Le Chesnay, France, 78150, France
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Dr Maryam PIRAM
Le Kremlin-Bicêtre, 94270, France
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TENON
Paris, Paris, 75020, France
Conditions
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