Understanding the genetic causes of Mayer-Rokitansky-Kuster-Hauser syndrome
Official title: Etude de Génétique moléculaire du Syndrome de Mayer-Rokitansky-Kuster-Hauser
Run by Imagine Institute · NCT02967822 · Data updated 2026-11-12
This study is trying to find out the genetic causes of Mayer-Rokitansky-Kuster-Hauser syndrome by looking at blood samples from patients and their healthy family members.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 410 (estimated) |
| Sponsor | Imagine Institute Academic / other |
| Locations | 2 sites (Paris and 1 other locations) |
| Status | Recruiting |
| Started | May 2016 |
| Main results expected | May 2031 |
| Study ends | May 2031 |
| Registry record updated | October 12, 2018 |
| Trial ID | NCT02967822 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include patients diagnosed with MRKH syndrome and their healthy relatives.
✕Probably not a fit
Patients who refuse to participate in genetic analyses or are currently involved in other therapeutic clinical studies may not 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 observational study aims to identify the molecular mechanisms behind Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH) by collecting biological samples from patients with MRKH and their healthy relatives. The research team will perform genetic analyses, particularly whole exome sequencing, to uncover genetic abnormalities associated with this rare condition. Participants will provide blood samples, and if applicable, uterine tissue during surgical procedures. The collaboration between the Imagine Institute and the Reference Center for Rare Diseases will enhance the medical expertise and support for this research.
Why it matters
Potential benefit: If successful, this study could lead to a better understanding of MRKH syndrome and potentially inform future genetic counseling and treatment options for affected individuals.
How similar studies have gone: Other studies focusing on genetic analyses of rare syndromes have shown promise, suggesting that this approach could yield valuable insights into MRKH syndrome.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patient with MRKH syndrome OR healthy relative of patient included * Having signed the Informed consent form (or parents in case of patient under 18 years) Exclusion Criteria: * Refusal to participate in genetic analyses * Participation in a therapeutical clinical study in the 30 days prior to inclusion in the present study.
Where it's running
-
Necker - Enfants malades hospital
Paris, France Recruiting -
Institut Mutualiste Montsouris
Paris, France Recruiting
Study contacts
- Principal investigator: Michel Polak — Necker - Enfants malades hospital
- Study coordinator: Stanislas Lyonnet
- Email: stanislas.lyonnet@inserm.fr
- Phone: +33 1 44 49 51 36
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Uterine transplant for women with infertility due to absence of uterus
This study is testing if a uterine transplant from a donor can help women with no uterus due to infertility become pregnant and have a baby.
-
Uterine transplantation from living donors for women with MRKH syndrome
This study is testing if women with MRKH syndrome can successfully receive a uterus transplant from living donors to help them achieve pregnancy.
-
Uterus transplantation from a deceased donor
This study is testing if women with Mayer-Rokitansky-Küster-Hauser syndrome can become pregnant by receiving a uterus from a deceased donor and using frozen embryos.
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.