Actively Recruiting
Evaluation of the Quality of Life and Gynecological Follow-up of Patients Treated for Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome
Led by University Hospital, Toulouse · Updated on 2026-04-02
102
Participants Needed
1
Research Sites
78 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome affects 1 in 4,500 women and consists of utero-vaginal aplasia in 46 chromosom XX women, most often diagnosed in the presence of primary amenorrhea. This diagnosis, occurring in adolescence during the period of identity formation, can have significant psychological repercussions. This malformation can alter the body image and personal relationships of affected patients, beyond the impact on their sexual lives. Management around the disclosure is a crucial moment for these patients. Individual or group psychological support is systematically offered. Several international studies show that these patients experience a decline in their quality of life, and they are more anxious and depressed. Participation in support groups improves this state. The objective of this study is therefore to better understand Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome and the issues patients may face. For this reason, it seems essential to us to evaluate the overall quality of life, the quality of sexual life, the psychological state and the gynecological follow-up of women before or after treatment for vaginal aplasia.
CONDITIONS
Official Title
Evaluation of the Quality of Life and Gynecological Follow-up of Patients Treated for Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Female patients over 18 and under 50 years old
- Confirmed diagnosis of Mayer-Rokitansky-Küster-Hauser syndrome
- Diagnosis announced more than 1 year ago
- Patient treated by the CRMR PGR
- Affiliated with or benefiting from a social security scheme
- Fluent in French
You will not qualify if you...
- Patients younger than 18 or older than 50 years
- Diagnosis of MRKH syndrome less than 1 year ago
- Other causes of uterine or vaginal aplasia, surgical or congenital
- Patients under legal protection measures (guardianship, curatorship)
- Unable to understand or answer questionnaires
AI-Screening
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Trial Site Locations
Total: 1 location
1
Service d'Endocrino-gynéco-pédiatrie, Hôpital des Enfants, 330 Avenue de Grande Bretagne
Toulouse, France, 31059
Actively Recruiting
Research Team
A
Audrey CARTAULT, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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