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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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