FARD (RaDiCo Cohort) (RaDiCo-FARD)

Launched by INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE, FRANCE · Jul 18, 2023

Keywords

ClinConnect Summary

The RaDiCo-FARD trial is studying the impact of nine rare skin diseases on patients and their families. These conditions include Inherited Epidermolysis Bullosa, Ichthyosis, and Neurofibromatosis Type 1, among others. The goal is to understand how these diseases affect daily life, including psychological, social, economic, and physical challenges. To do this, patients or their family members will fill out a special questionnaire designed to measure their personal experience with the disease. Researchers will also look at all the resources families use, both medical and non-medical, to manage these conditions.

To be eligible for this study, participants must have a confirmed diagnosis of one of the nine rare skin diseases and be receiving care at a specific healthcare network. Both adults and children can participate, but children will need their parents' consent. Participants can expect to share their experiences through surveys and will help researchers gather valuable information about living with these conditions. It's important to note that individuals who cannot understand the survey or do not provide consent cannot join the study.

Gender

ALL

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 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