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FARD (RaDiCo Cohort) (RaDiCo-FARD)

Recruitingn/aAges any - anyAllInstitut National de la Santé Et de la Recherche …
NCT05954416 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
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
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What it tests

  • Not listed
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Where

15 sites
Hôpital Avicenne
Bobigny, 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
Hôpital de la Timone
Marseille, France
Hôpital Saint-Eloi
Montpellier, France

…and 7 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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