Status:

RECRUITING

FARD (RaDiCo Cohort) (RaDiCo-FARD)

Lead Sponsor:

Institut National de la Santé Et de la Recherche Médicale, France

Conditions:

Inherited Epidermolysis Bullosa

Ichthyosis

Eligibility:

All Genders

Brief 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, soci...

Eligibility Criteria

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

Key Trial Info

Start Date :

March 7 2018

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

March 7 2027

Estimated Enrollment :

900 Patients enrolled

Trial Details

Trial ID

NCT05954416

Start Date

March 7 2018

End Date

March 7 2027

Last Update

February 12 2026

Active Locations (15)

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Page 1 of 4 (15 locations)

1

Hôpital Avicenne

Bobigny, France

2

Hôpital des Enfants - Groupe Hospitalier Pellegrin

Bordeaux, France

3

Hôpital des Enfants - Groupe Hospitalier Pellegrin

Bordeaux, France

4

Hôpital Henri-Mondor

Créteil, France

FARD (RaDiCo Cohort) (RaDiCo-FARD) | DecenTrialz