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.
Study Type
OBSERVATIONAL
Enrollment
900
Hôpital Avicenne
Bobigny, France
NOT_YET_RECRUITINGHôpital des Enfants - Groupe Hospitalier Pellegrin
Bordeaux, France
NOT_YET_RECRUITINGHôpital des Enfants - Groupe Hospitalier Pellegrin
Bordeaux, France
NOT_YET_RECRUITINGHôpital Henri-Mondor
Créteil, France
NOT_YET_RECRUITINGHôpital François Mitterrand
Dijon, France
NOT_YET_RECRUITINGHôpital Dupuytren
Limoges, France
NOT_YET_RECRUITINGHôpital de la Timone
Marseille, France
NOT_YET_RECRUITINGHôpital Saint-Eloi
Montpellier, France
NOT_YET_RECRUITINGHôpital l'Archet
Nice, France
RECRUITINGHôpital Necker-Enfants Malades
Paris, France
RECRUITING...and 5 more locations
Individual burden score for each selected rare disease
Before 16 years old, we will focus on the burden of families. After 16 years old, the patient's parent will continue to answer to the family Burden questionnaire and the patient will start to answer to the adult's Burden questionnaire.
Time frame: Through study completion, an average of 5 years
Description of calculated scores based on widely used survey completed by patients
Time frame: Through study completion, an average of 5 years
Description of calculated scores based on widely used survey completed by parents
Time frame: Through study completion, an average of 5 years
Description of variations of quality-of-life scores.
Time frame: Through study completion, an average of 5 years
Validation of the clinical severity score for disease which have none at the beginning of the study and description of clinical severity score.
Time frame: Through study completion, an average of 5 years
Descriptive analysis of the socio-economic Burden.
Time frame: Through study completion, an average of 5 years
Descriptive analysis of the Individual Health Care Cost.
Time frame: Through study completion, an average of 5 years
Search for association between individual burden score and clinical severity of the disease.
Time frame: Through study completion, an average of 5 years
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