Actively Recruiting
FARD (RaDiCo Cohort) (RaDiCo-FARD)
Led by Institut National de la Santé Et de la Recherche Médicale, France · Updated on 2026-02-12
900
Participants Needed
15
Research Sites
469 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
FARD (RaDiCo Cohort) (RaDiCo-FARD)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults or children with a confirmed diagnosis of one of the nine rare skin diseases: Inherited Epidermolysis Bullosa, Ichthyosis, Ectodermal Dysplasia, Incontinentia Pigmenti, Neurofibromatosis Type 1, Albinism, Pemphigus, Mucous Membrane Pemphigoid, or Palmoplantar Keratoderma
- Prevalent or new cases followed at a reference or competence center within the FIMARAD healthcare network
- Able to understand the survey (parents must understand for children)
- Signed consent provided to participate in the RaDiCo-FARD cohort (parental consent for children)
You will not qualify if you...
- Patients who cannot maintain regular care follow-up with FIMARAD network sites
- Unconfirmed diagnosis according to disease-specific criteria
- Patients or parents unable to understand the survey
- Patients or parents who have not signed consent to participate in the study
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 15 locations
1
Hôpital Avicenne
Bobigny, France
Not Yet Recruiting
2
Hôpital des Enfants - Groupe Hospitalier Pellegrin
Bordeaux, France
Not Yet Recruiting
3
Hôpital des Enfants - Groupe Hospitalier Pellegrin
Bordeaux, France
Not Yet Recruiting
4
Hôpital Henri-Mondor
Créteil, France
Not Yet Recruiting
5
Hôpital François Mitterrand
Dijon, France
Not Yet Recruiting
6
Hôpital Dupuytren
Limoges, France
Not Yet Recruiting
7
Hôpital de la Timone
Marseille, France
Not Yet Recruiting
8
Hôpital Saint-Eloi
Montpellier, France
Not Yet Recruiting
9
Hôpital l'Archet
Nice, France
Actively Recruiting
10
Hôpital Necker-Enfants Malades
Paris, France
Actively Recruiting
11
Hôpital Saint-Louis
Paris, France
Actively Recruiting
12
Hôpital Robert-Debré
Reims, France
Not Yet Recruiting
13
Hôpital Charles Nicolle
Rouen, France
Actively Recruiting
14
Hôpital Larrey
Toulouse, France
Actively Recruiting
15
Hôpital Trousseau
Tours, France
Actively Recruiting
Research Team
C
Christine BODEMER
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here