Condition: Inherited Epidermolysis Bullosa · Ichthyosis · Ectodermal Dysplasia · Sponsor: Institut National de la Santé Et de la Recherche Médicale, France
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.
This description comes directly from the study's public registry record.
Christine BODEMER · + 33 1 44 49 46 72 · christine.bodemer@aphp.fr
Always discuss trial participation with your own doctor first.
| Hôpital Avicenne | Bobigny, France | Not Yet Recruiting |
| Hôpital des Enfants - Groupe Hospitalier Pellegrin | Bordeaux, France | Not Yet Recruiting |
| Hôpital des Enfants - Groupe Hospitalier Pellegrin | Bordeaux, France | Not Yet Recruiting |
| Hôpital Henri-Mondor | Créteil, France | Not Yet Recruiting |
| Hôpital François Mitterrand | Dijon, France | Not Yet Recruiting |
| Hôpital Dupuytren | Limoges, France | Not Yet Recruiting |
| Hôpital de la Timone | Marseille, France | Not Yet Recruiting |
| Hôpital Saint-Eloi | Montpellier, France | Not Yet Recruiting |
| Hôpital l'Archet | Nice, France | Recruiting |
| Hôpital Necker-Enfants Malades | Paris, France | Recruiting |
| Hôpital Saint-Louis | Paris, France | Recruiting |
| Hôpital Robert-Debré | Reims, France | Not Yet Recruiting |
+ 3 more locations — full list on the registry record.
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Source record: clinicaltrials.gov/study/NCT05954416