Spots Global Cancer Trial Database for FARD (RaDiCo Cohort) (RaDiCo-FARD)
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Trial Identification
Brief Title: FARD (RaDiCo Cohort) (RaDiCo-FARD)
Official Title: National Cohort for Evaluation of the Burden of Rare Skin Diseases
Study ID: NCT05954416
Interventions
Study Description
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, 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.
Detailed Description:
Keywords
Eligibility
Minimum Age:
Eligible Ages: CHILD, ADULT, OLDER_ADULT
Sex: ALL
Healthy Volunteers: No
Locations
H么pital Avicenne, Bobigny, , France
H么pital des Enfants - Groupe Hospitalier Pellegrin, Bordeaux, , France
H么pital des Enfants - Groupe Hospitalier Pellegrin, Bordeaux, , France
H么pital Henri-Mondor, Cr茅teil, , France
H么pital Fran莽ois Mitterrand, Dijon, , France
H么pital Dupuytren, Limoges, , France
H么pital de la Timone, Marseille, , France
H么pital Saint-Eloi, Montpellier, , France
H么pital l'Archet, Nice, , France
H么pital Necker-Enfants Malades, Paris, , France
H么pital Saint-Louis, Paris, , France
H么pital Robert-Debr茅, Reims, , France
H么pital Charles Nicolle, Rouen, , France
H么pital Larrey, Toulouse, , France
H么pital Trousseau, Tours, , France
Contact Details
Name: Christine BODEMER
Affiliation: INSERM UMR 1163
Role: PRINCIPAL_INVESTIGATOR
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