FARD (RaDiCo Cohort) (RaDiCo-FARD)
Recruiting now
Conditions studied: Inherited Epidermolysis Bullosa, Ichthyosis, Ectodermal Dysplasia, Incontinentia Pigmenti, Neurofibromatosis Type 1, Albinism, Pemphigus, Mucous Membrane Pemphigoid, Palmoplantar Keratoderma
In brief
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.
Key facts
- Study ID
- NCT05954416
- Run by
- Institut National de la Santé Et de la Recherche Médicale, France
- People needed
- 900
- Starts
- 2018-03-07
- Expected to finish
- 2027-03-07
- Last updated by the study team
- 2026-02-12
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
Where it is running
- Hôpital Necker-Enfants Malades — Paris, France (enrolling)
- Hôpital Saint-Louis — Paris, France (enrolling)
- Hôpital l'Archet — Nice, France (enrolling)
- Hôpital Charles Nicolle — Rouen, France (enrolling)
- Hôpital Larrey — Toulouse, France (enrolling)
- Hôpital Trousseau — Tours, France (enrolling)
- Hôpital de la Timone — Marseille, France
- Hôpital Avicenne — Bobigny, France
- Hôpital Robert-Debré — Reims, France
- Hôpital Saint-Eloi — Montpellier, France
- Hôpital des Enfants - Groupe Hospitalier Pellegrin — Bordeaux, France
- Hôpital des Enfants - Groupe Hospitalier Pellegrin — Bordeaux, France
- Hôpital Henri-Mondor — Créteil, France
- Hôpital François Mitterrand — Dijon, France
- Hôpital Dupuytren — Limoges, France
Full record on ClinicalTrials.gov
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