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

Recruitingn/aAges 18 Years - 50 YearsFemaleUniversity Hospital, Toulouse
NCT07186764 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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)

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📋 Eligibility rules (as published)
Inclusion Criteria: * 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 Exclusion Criteria: * 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
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What it tests

  • Questionnaires
  • Semi-directed interview
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Where

1 site
Service d'Endocrino-gynéco-pédiatrie, Hôpital des Enfants, 330 Avenue de Grande Bretagne
Toulouse, France
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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