Quality of life and gynecological follow-up after treatment for MRKH syndrome
Official title: Evaluation of the Overall Quality of Life and Gynecological Follow-up of Patients Treated for Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome at the Toulouse University Hospital
Run by University Hospital, Toulouse · NCT07186764 · Data updated 2026-11-12
This study will collect questionnaires and interviews to see how treatments and follow-up affect quality of life for adults with MRKH syndrome compared with a control group.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 50 Years |
| Sex | Women only |
| Enrollment | 102 (estimated) |
| Sponsor | University Hospital, Toulouse Academic / other |
| Locations | 1 site (Toulouse) |
| Status | Recruiting |
| Started | March 4, 2026 |
| Main results expected | March 4, 2027 |
| Study ends | September 1, 2027 |
| Registry record updated | April 2, 2026 |
| Trial ID | NCT07186764 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are French-speaking adults aged 18–50 with a confirmed MRKH diagnosis made more than one year ago, treated by the CRMR PGR and affiliated with a social security scheme.
✕Probably not a fit
Patients recently diagnosed (<1 year), those under legal protection or unable to complete questionnaires, people older than 50, or those with other causes of uterine/vaginal aplasia are not likely to benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This is an observational study using standardized questionnaires and semi-structured interviews to describe quality of life, psychological well-being, and gynecological follow-up in adults with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. Researchers will enroll MRKH patients treated through the regional Rare Gynecological Pathology Reference Center (CRMR PGR) and a control population, applying inclusion criteria including age 18–50 and fluency in French. Data collection will include history of vaginal creation or dilation, time since diagnosis, and experiences with disclosure and support, with comparisons made between patient-reported outcomes and controls. Findings will be used to characterize care needs and inform supportive practices for patients with MRKH.
Why it matters
Potential benefit: If successful, the study could identify care and support practices that improve body image, sexual functioning, and mental health for women with MRKH.
How similar studies have gone: Several international studies have reported reduced quality of life and higher anxiety/depression in MRKH patients and have shown that participation in support groups can improve outcomes, so this work builds on existing evidence.
Who can join: the full rules
Show full inclusion / exclusion criteria
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
Where it's running
-
Service d'Endocrino-gynéco-pédiatrie, Hôpital des Enfants, 330 Avenue de Grande Bretagne
Toulouse, France Recruiting
Study contacts
- Study coordinator: Audrey CARTAULT, MD
- Email: cartault.a@chu-toulouse.fr
- Phone: 05 67 77 11 29
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.