Status:
ACTIVE_NOT_RECRUITING
Impact of Complex Care Training of Hereditary Epidermolysis Bullosa on Caregiver Burden (FIREB)
Lead Sponsor:
Assistance Publique - Hôpitaux de Paris
Conditions:
Hereditary Epidermolysis Bullosa
Eligibility:
All Genders
18+ years
Brief Summary
Hereditary epidermolysis bullosa (EBH) is a rare, orphan disease characterized by skin and mucous membrane fragility. The latest scientific data show that the proposed treatments are still in the exp...
Eligibility Criteria
Inclusion
- Inclusion Criteria:
- Nurse, nursing assistant, nursery nurse, childcare assistant, state graduates caring for patients with EBH and working at Necker Hospital.
- Having participated in the entire training program specific to the complex care of epidermolysis bullosa.
- Informed and not opposed to their participation in research.
- Exclusion Criteria
- Person under tutorship or curatorship.
- Other health professionals (physiotherapist, doctor, etc.).
Exclusion
Key Trial Info
Start Date :
June 1 2023
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
May 1 2025
Estimated Enrollment :
19 Patients enrolled
Trial Details
Trial ID
NCT05248503
Start Date
June 1 2023
End Date
May 1 2025
Last Update
January 7 2025
Active Locations (1)
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1
Assistance Publique - Hôpitaux de Paris
Paris, France, 75015