RECRUITINGOBSERVATIONAL

FARD (RaDiCo Cohort) (RaDiCo-FARD)

National Cohort for Evaluation of the Burden of Rare Skin Diseases

About This Trial

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.

Who May Be Eligible (Plain English)

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 Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language

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

Locations (15)

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

Hôpital l'Archet

Nice, France

Hôpital Necker-Enfants Malades

Paris, France

Hôpital Saint-Louis

Paris, France

Hôpital Robert-Debré

Reims, France

Hôpital Charles Nicolle

Rouen, France

Hôpital Larrey

Toulouse, France

Hôpital Trousseau

Tours, France