FARD (RaDiCo Cohort) (RaDiCo-FARD)
Recruiting
Observational Study
Inherited Epidermolysis Bullosa
Ichthyosis
Ectodermal Dysplasia
Incontinentia Pigmenti
Neurofibromatosis Type 1
Albinism
Pemphigus
Mucous Membrane Pemphigoid
Palmoplantar Keratoderma
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 900 (estimated)
- Sponsor
- Institut National de la Santé Et de la Recherche Médicale, France · Government
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About This Trial
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 creat…
Trial Locations
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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 kerat…
Contacts