FARD (RaDiCo Cohort) (RaDiCo-FARD)

Last updated: January 31, 2025
Sponsor: Institut National de la Santé Et de la Recherche Médicale, France
Overall Status: Active - Recruiting

Phase

N/A

Condition

Neurofibromatosis

Precancerous Condition

Pemphigus Vulgaris (Pv)

Treatment

N/A

Clinical Study ID

NCT05954416
C16-78
  • All Genders

Study Summary

The goal of this observational study is to conduct a prospective assessment of the individual Burden of 9 rare skin diseases to assess disability in the broadest sense of the term (psychological, social, economic and physical) for patients and/or families.

Two types of indicators will be used to reach this objective :

  1. an individual burden score calculated based on a burden questionnaire created specifically, approved and designed to understand the tendency to changes in care and lifestyles. The burden questionnaire should be used by patients and/or their family themselves in self-assessment.

  2. a descriptive analysis of all resources (medical and non-medical) used by the family unit to manage the disease.

Eligibility Criteria

Inclusion

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

Study Design

Total Participants: 900
Study Start date:
March 07, 2018
Estimated Completion Date:
March 07, 2027

Connect with a study center

  • Hôpital Avicenne

    Bobigny,
    France

    Site Not Available

  • Hôpital des Enfants - Groupe Hospitalier Pellegrin

    Bordeaux,
    France

    Site Not Available

  • Hôpital Henri-Mondor

    Créteil,
    France

    Site Not Available

  • Hôpital François Mitterrand

    Dijon,
    France

    Site Not Available

  • Hôpital Dupuytren

    Limoges,
    France

    Site Not Available

  • Hôpital de la Timone

    Marseille,
    France

    Site Not Available

  • Hôpital Saint-Eloi

    Montpellier,
    France

    Site Not Available

  • Hôpital l'Archet

    Nice,
    France

    Active - Recruiting

  • Hôpital Necker-Enfants Malades

    Paris,
    France

    Active - Recruiting

  • Hôpital Saint-Louis

    Paris,
    France

    Active - Recruiting

  • Hôpital Robert-Debré

    Reims,
    France

    Site Not Available

  • Hôpital Charles Nicolle

    Rouen,
    France

    Active - Recruiting

  • Hôpital Larrey

    Toulouse,
    France

    Active - Recruiting

  • Hôpital Trousseau

    Tours,
    France

    Active - Recruiting

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