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FARD (RaDiCo Cohort) (RaDiCo-FARD)

NCT05954416 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 900

Last updated 2026-02-12

No results posted yet for this study

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.

Conditions

  • Inherited Epidermolysis Bullosa
  • Ichthyosis
  • Ectodermal Dysplasia
  • Incontinentia Pigmenti
  • Neurofibromatosis Type 1
  • Albinism
  • Pemphigus
  • Mucous Membrane Pemphigoid
  • Palmoplantar Keratoderma

Sponsors & Collaborators

  • Institut National de la Santé Et de la Recherche Médicale, France

    lead OTHER_GOV

Principal Investigators

  • Christine BODEMER · INSERM UMR 1163

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2018-03-07
Primary Completion
2027-03-07
Completion
2027-03-07

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05954416 on ClinicalTrials.gov