New study to measure hidden toll of rare skin diseases on patients and families
NCT ID NCT05954416
First seen Feb 14, 2026 · Last updated May 01, 2026 · Updated 12 times
Summary
This study aims to understand how 9 rare skin diseases affect people's lives beyond just physical symptoms. Researchers will survey 900 patients and their families to measure the emotional, social, and financial burden. The goal is to create a tool that helps doctors and caregivers better support those living with these conditions.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Hôpital Avicenne
NOT_YET_RECRUITINGBobigny, France
Contact
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Hôpital Charles Nicolle
RECRUITINGRouen, France
Contact
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Hôpital Dupuytren
NOT_YET_RECRUITINGLimoges, France
Contact
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Hôpital François Mitterrand
NOT_YET_RECRUITINGDijon, France
Contact
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Hôpital Henri-Mondor
NOT_YET_RECRUITINGCréteil, France
Contact
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Hôpital Larrey
RECRUITINGToulouse, France
Contact
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Hôpital Necker-Enfants Malades
RECRUITINGParis, France
Contact
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Hôpital Robert-Debré
NOT_YET_RECRUITINGReims, France
Contact
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Hôpital Saint-Eloi
NOT_YET_RECRUITINGMontpellier, France
Contact
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Hôpital Saint-Louis
RECRUITINGParis, France
Contact
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Hôpital Trousseau
RECRUITINGTours, France
Contact
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Hôpital de la Timone
NOT_YET_RECRUITINGMarseille, France
Contact
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Hôpital des Enfants - Groupe Hospitalier Pellegrin
NOT_YET_RECRUITINGBordeaux, France
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Hôpital des Enfants - Groupe Hospitalier Pellegrin
NOT_YET_RECRUITINGBordeaux, France
Contact
Contact
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Hôpital l'Archet
RECRUITINGNice, France
Contact
Conditions
Explore the condition pages connected to this study.