New study to measure hidden toll of rare skin diseases on patients and families
NCT ID NCT05954416
First seen Feb 14, 2026 · Last updated Jun 18, 2026 · Updated 20 times
Summary
This study aims to understand the full burden of 9 rare skin diseases—including physical, emotional, social, and financial challenges—on patients and their families. Researchers will use special questionnaires to track how these conditions affect daily life and care needs. About 900 adults and children with confirmed diagnoses will participate, helping to improve future support and resources.
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This is a summary of
the original study
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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
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.