Gynecological Follow-up of Patients With Dystrophic Epidermolysis Bullosa (EBD)

Centre Hospitalier Universitaire de Nice

Status: Completed

Conditions: Dystrophic Epidermolysis Bullosa

Treatments: Other: Decriptive study of EDB

Study type: Observational

Funder types: Other

Identifiers

NCT04757727

21dermato01

Details and patient eligibility

About

Dystrophic epidermolysis bullosa is a rare genetic pathology resulting in fragility of the skin and mucous membranes, causing bubbles and wounds following trauma. Scarring is pathological with a tendency to retraction. The gynecological and in particular the vulvovaginal mucous membranes can be affected but no description of any series is available in the literature. Likewise, some of these patients have a sexual and obstetrical life, despite sometimes-severe damage, but again no specific data is available. The investitigator thus wish to carry out a non-interventional multicenter prospective descriptive study. Better knowledge of gynecological semiology in patients with EBD will allow better adaptation of gynecological follow-up, screening for STDs and gynecological cancers, as well as possible specific complications. This study would eventually allow the draw up of recommendations for our gynecologist / obstetrician colleagues.

Enrollment: 27 patients

Sex: Female

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• 18 years old or older
• with hereditary dystrophic epidermolysis bullosa (dominant or recessive)
• followed at the Nice University Hospital or at the St Louis Hospital of the APHP.
• not opposed to participation after being informed of the study

Exclusion criteria

• men
• age < 18years old

Trial design

27 participants in 1 patient group

EDB

Description:

Adult women (\> 18 years old) with hereditary dystrophic epidermolysis bullosa (dominant or recessive) followed at the Nice University Hospital or at the St Louis Hospital of the APHP

Treatment:

Other: Decriptive study of EDB