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

NCT ID NCT05954416

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 900 people

The number the study aims to enrol. It can still change while the study runs.

Started

Mar 2018

Expected to finish

Mar 2027

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This study concerns patients affected by one the 9 following rare skin diseases: Inherited epidermolysis bullosa, ichthyosis, ectodermal dysplasia, Incontinentia Pigmenti, neurofibromatosis type 1, albinism, pemphigus, mucous membrane pemphigoid, and palmoplantar keratoderma recruited and followed in a reference/competence centre of the healthcare network of rare dermatologic diseases, FIMARAD.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion criteria : * adults or children with a confirmed diagnosis of one of the 9 following rare skin disease: Inherited epidermolysis bullosa, Ichthyosis, Ectodermal dysplasia, Incontinetia Pigmenti, Neurofibromatosis type 1, Albinism, Pemphigus, Mucous membrane pemphigoid or Palmoplantar keratoderma. * prevalent or incident and followed in one the reference/competence centers of the FIMARAD healthcare network, * able to understand a survey (for child, survey should be understood by parents), * having given their signed consent to participate to the cohort RaDiCo-FARD (parents' consent for child). Non-inclusion criteria : * Patients, for whom regular care follow-up is not feasible with the FIMARAD healthcare network sites, * Unconfirmed diagnosis (according to criteria for each disease), * Patients (and/or parents) not able to understand a survey * Patients (and/or parents) not having given their signed consent to participate to the study

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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

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    15 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

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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