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Clinical Trial 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.


Clinical Trial Description

n/a


Study Design


Related Conditions & MeSH terms


NCT number NCT05954416
Study type Observational
Source Institut National de la Santé Et de la Recherche Médicale, France
Contact Christine BODEMER
Phone + 33 1 44 49 46 72
Email christine.bodemer@aphp.fr
Status Recruiting
Phase
Start date March 7, 2018
Completion date March 7, 2027

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