Trials / Recruiting
RecruitingNCT05954416
FARD (RaDiCo Cohort) (RaDiCo-FARD)
National Cohort for Evaluation of the Burden of Rare Skin Diseases
- Status
- Recruiting
- Phase
- —
- Study type
- Observational
- Enrollment
- 900 (estimated)
- Sponsor
- Institut National de la Santé Et de la Recherche Médicale, France · Other Government
- Sex
- All
- Age
- —
- Healthy volunteers
- Not accepted
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
Timeline
- Start date
- 2018-03-07
- Primary completion
- 2027-03-07
- Completion
- 2027-03-07
- First posted
- 2023-07-20
- Last updated
- 2026-02-12
Locations
15 sites across 1 country: France
Source: ClinicalTrials.gov record NCT05954416. Inclusion in this directory is not an endorsement.