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Landmark study seeks to measure the hidden toll of rare skin conditions

NCT ID NCT05954416

Recruiting now Knowledge-focused Sponsor: Institut National de la Santé Et de la Recherche Médicale, France Source: ClinicalTrials.gov ↗

Summary

This study aims to measure the full burden—including physical, emotional, social, and financial impacts—of living with nine rare skin diseases. Researchers will enroll 900 patients and their families across France to complete detailed surveys about their daily lives and healthcare use. The goal is to better understand the challenges these conditions create to improve future support and care.

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

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Hôpital Avicenne

    NOT_YET_RECRUITING

    Bobigny, France

    Contact

  • Hôpital Charles Nicolle

    RECRUITING

    Rouen, France

    Contact

  • Hôpital Dupuytren

    NOT_YET_RECRUITING

    Limoges, France

    Contact

  • Hôpital François Mitterrand

    NOT_YET_RECRUITING

    Dijon, France

    Contact

  • Hôpital Henri-Mondor

    NOT_YET_RECRUITING

    Créteil, France

    Contact

  • Hôpital Larrey

    RECRUITING

    Toulouse, France

    Contact

  • Hôpital Necker-Enfants Malades

    RECRUITING

    Paris, France

    Contact

  • Hôpital Robert-Debré

    NOT_YET_RECRUITING

    Reims, France

    Contact

  • Hôpital Saint-Eloi

    NOT_YET_RECRUITING

    Montpellier, France

    Contact

  • Hôpital Saint-Louis

    RECRUITING

    Paris, France

    Contact

  • Hôpital Trousseau

    RECRUITING

    Tours, France

    Contact

  • Hôpital de la Timone

    NOT_YET_RECRUITING

    Marseille, France

    Contact

  • Hôpital des Enfants - Groupe Hospitalier Pellegrin

    NOT_YET_RECRUITING

    Bordeaux, France

  • Hôpital des Enfants - Groupe Hospitalier Pellegrin

    NOT_YET_RECRUITING

    Bordeaux, France

    Contact

    Contact

  • Hôpital l'Archet

    RECRUITING

    Nice, France

    Contact

Conditions

Explore the condition pages connected to this study.

ALBINISM ECTODERMAL DYSPLASIA ICHTHYOSIS INCONTINENTIA PIGMENTI INHERITED EPIDERMOLYSIS BULLOSA MUCOUS MEMBRANE PEMPHIGOID NEUROFIBROMATOSIS TYPE 1 PALMOPLANTAR KERATODERMA PEMPHIGUS