New study to measure hidden toll of rare skin diseases on patients and families

NCT ID NCT05954416

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

First seen Jun 27, 2026 · Last updated Jun 27, 2026

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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Conditions

The condition(s) this trial relates to.

albinism ectodermal dysplasia syndrome ichthyosis incontinentia pigmenti inherited epidermolysis bullosa Keratoderma, Palmoplantar mucous membrane pemphigoid neurofibromatosis type 1 odonto-onycho-dermal dysplasia palmoplantar keratosis Pemphigoid, Benign Mucous Membrane pemphigus

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

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

Contacts and locations

Locations

Hôpital Avicenne
NOT_YET_RECRUITING

Bobigny, France
Hôpital Charles Nicolle
RECRUITING

Rouen, France
Hôpital Dupuytren
NOT_YET_RECRUITING

Limoges, France
Hôpital François Mitterrand
NOT_YET_RECRUITING

Dijon, France
Hôpital Henri-Mondor
NOT_YET_RECRUITING

Créteil, France
Hôpital Larrey
RECRUITING

Toulouse, France
Hôpital Necker-Enfants Malades
RECRUITING

Paris, France
Hôpital Robert-Debré
NOT_YET_RECRUITING

Reims, France
Hôpital Saint-Eloi
NOT_YET_RECRUITING

Montpellier, France
Hôpital Saint-Louis
RECRUITING

Paris, France
Hôpital Trousseau
RECRUITING

Tours, France
Hôpital de la Timone
NOT_YET_RECRUITING

Marseille, France
Hôpital des Enfants - Groupe Hospitalier Pellegrin
NOT_YET_RECRUITING

Bordeaux, France
Hôpital des Enfants - Groupe Hospitalier Pellegrin
NOT_YET_RECRUITING

Bordeaux, France
Hôpital l'Archet
RECRUITING

Nice, France

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