ClinicalTrials.gov record NCT04194619

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 6, 2026

A National Prospective Cohort for Pregnancies in Patients With Rare Vascular Anomalies: COGRare5 Study

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
Age18 years old to 45 years old
SexFemale
LocationFrance
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This national prospective cohort collects information on pregnancies in women with several rare vascular disorders. Participants are interviewed by phone about serious obstetrical complications that occur during pregnancy and after birth. Data are collected every three months for up to 21 months to describe complications and support evidence-based recommendations.

What it is studying. The study is collecting details about specific and serious obstetrical complications that occur during pregnancy and in the months after delivery among women with rare vascular anomalies, to improve understanding of risks and to inform prevention and recommendation efforts.

What the researchers hope to learn. Describe how often and what kinds of serious obstetrical complications occur in pregnancies affected by these rare vascular diseases, and provide scientific data to support development of prevention recommendations and reduce risk of death.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

There are no prospective studies of pregnancies for the diseases studied here in (Heredity Hemorrhagic Telangiectasia, Marfan syndrome or related, primary lower limb lymphedema, superficial arteriovenous malformations, and cerebro-spinal arteriovenous malformations) although complications of these can present life-threatening health problems for the mother and her baby. The purpose of this National prospective study is to obtain greater insight into obstetrical complications associated with rare maternal vascular genetic disorders in order to improve prevention and to reduce risk of death. In this context, experts and patient associations consider that there is a need to make real progress in the formulation of recommendations based on scientific data.

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other
  • Questionnaire

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

  • Women aged ≥ 18 years and ≤45 years at the time of inclusion
  • Pregnant and/or having given birth less than 1 month (≤ 30 days)
  • Clinically and/or radiological and/or molecular biology diagnosis of a rare vascular disease before or during pregnancy or one month after delivery.
  • Having been informed of all pertinent aspects of the study and provided oral non-opposition.

Exclusion criteria

  • Any person not fulfilling the inclusion criteria or refusing to take part in the study.
  • Major under legal protection

Study description and what participation involves

The registry record has no detailed description beyond the summary above.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants take part in phone interviews (a questionnaire) about severe and specific obstetrical complications during pregnancy and after delivery. Interviews are scheduled every 3 months for up to 21 months per the registry. Before participation, women must be informed about the study and give oral non-opposition. The registry lists the phone questionnaire as the study activity.

How the study is structured. A prospective observational cohort: women with the listed vascular conditions take part in structured phone interviews (questionnaires) about pregnancy-related complications. Follow-up questionnaires are scheduled every three months, with data collection up to 21 months.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in France. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on Marfan syndrome

Clinical trials20 trials listed for Marfan syndromeEvery trial the registry lists for Marfan syndrome, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in Marfan syndrome researchLatest monthly update: September 2026. Includes: After open aortic repair. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
Feb 6, 2020
Primary completion
February 2027 (estimated)
Study completion
November 2028 (estimated)
Target enrollment
400 participants (estimated)
Last updated on registry
Sep 28, 2026
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Hospices Civils de Lyon

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (37)

Terms used on this page · explanations by MedicalUpdates.ai

inclusion criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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