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Pregnancy in women with rare vascular diseases

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

Observational Hospices Civils de Lyon · NCT04194619

This study is trying to learn about the pregnancy challenges faced by women with rare vascular diseases to help improve care for them and their babies.

Quick facts

Study typeObservational
Enrollment400 (estimated)
Ages18 Years to 45 Years
SexFemale
SponsorHospices Civils de Lyon Academic / other
Locations36 sites (Angers and 35 other locations)
Trial IDNCT04194619 on ClinicalTrials.gov

What this trial studies

This observational study aims to gather data on the obstetrical complications faced by women with rare vascular genetic disorders during pregnancy. It focuses on conditions such as Hereditary Hemorrhagic Telangiectasia, Marfan syndrome, and primary lower limb lymphedema. By collecting information through questionnaires, the study seeks to improve understanding and management of risks associated with these conditions in pregnant women. The ultimate goal is to formulate evidence-based recommendations to enhance maternal and fetal health outcomes.

Who should consider this trial

Good fit: Ideal candidates for this study are women aged 18 to 45 who are currently pregnant or have given birth within the last month and have a diagnosis of a rare vascular disease.

Not a fit: Patients who do not meet the inclusion criteria or those under legal protection may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved prevention strategies and reduced risks of complications during pregnancy for women with rare vascular diseases.

How similar studies have performed: While there is limited data on similar studies, the need for evidence-based recommendations indicates a gap in current research, suggesting this approach may be novel.

Eligibility criteria

Show full inclusion / exclusion criteria 
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

Where this trial is running

Angers and 35 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Vascular AnomalyOsler Rendu DiseaseMarfan Syndrome or RelatedLymphedema PrimaryArteriovenous MalformationsCerebrospinalDisorder
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.