Evaluation of the Quality of Life and Gynecological Follow-up of Patients Treated for Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome

Recruiting now

Conditions studied: Mrkh Syndrome

In brief

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.

Key facts

Study ID

NCT07186764

Run by

University Hospital, Toulouse

People needed

102

Starts

2026-03-04

Expected to finish

2027-09-01

Last updated by the study team

2026-04-02

Who can join

Age: 18 and older, up to 50. Sex: female. Healthy volunteers: accepted.

You may qualify if…

• For Mayer-Rokitansky-Küster-Hauser patients:
• Patient over 18 and under 50
• Confirmed diagnosis of Mayer-Rokitansky-Küster-Hauser syndrome
• Diagnosis announced more than 1 year ago
• Patient treated by the CRMR PGR
• Patient affiliated with or benefiting from a social security scheme
• Fluency in French
• For the control population:
• Patient over 18 and under 50
• Patient affiliated with or benefiting from a social security scheme
• Fluency in French

You may not qualify if…

• For Mayer-Rokitansky-Küster-Hauser patients:
• Minors over 50 years of age
• Recent diagnosis < 1 year
• Other causes of uterine or vaginal aplasia, surgical or congenital
• Patients benefiting from a legal protection measure (guardianship, curatorship, legal protection)
• Patients unable to understand or answer the questionnaires
• For the control population:
• Minors over 50 years of age
• Patients benefiting from a legal protection measure (guardianship, curatorship, legal protection)
• Patients unable to understand or answer the questionnaires

Where it is running

• Service d'Endocrino-gynéco-pédiatrie, Hôpital des Enfants, 330 Avenue de Grande Bretagne — Toulouse, France (enrolling)

Full record on ClinicalTrials.gov

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