Clinical trial Recruiting at 31 sites Observational Ages 18 to 45 Women only

Pregnancy in women with rare vascular diseases

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

Run by Hospices Civils de Lyon · NCT04194619 · Data updated 2026-11-12

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.

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Quick facts

Study typeObservational
Ages18 Years to 45 Years
SexWomen only
Enrollment400 (estimated)
SponsorHospices Civils de Lyon
Academic / other
Locations37 sites (Angers and 36 other locations)
StatusRecruiting
StartedFebruary 6, 2020
Main results expectedFebruary 2027
Study endsNovember 2028
Registry record updatedSeptember 28, 2026
Trial IDNCT04194619 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a 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.

Probably not a fit

Patients who do not meet the inclusion criteria or those under legal protection 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 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.

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 gone: 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.

Who can join: the full rules

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 it's running

  • Service de Médecine Interne et Maladies Vasculaires + Service Neuropédiatrie et neurochirurgie de l'enfant - CHU Angers
    Angers, France
    Recruiting
  • Service Pneumologie et Oncologie Thoracique - AP-HP Hôpital Ambroise Paré
    Boulogne-Billancourt, France
    Recruiting
  • Centre de Référence pour la maladie de Rendu-Osler - Service Génétique Clinique - Hôpital Femme-Mère-Enfant - Hospices Civils de Lyon
    Bron, France
    Recruiting
  • Service d'Imagerie Pédiatrique et Fœtale et Consultation Pluridisciplinaire des Angiomes - Hôpital Femme-Mère-Enfant - HCL
    Bron, France
    Recruiting
  • Service de Génétique, Hôpital Femme-Mère-Enfant
    Bron, France
    Recruiting
  • Service de Médecine Vasculaire - Hôpital de la Côte de Nacre
    Caen, France
    Recruiting
Show 31 more locations
  • Service Médecine Interne Estaing CHU de Clermont-Ferrand - Hôpital d'Estaing
    Clermont-Ferrand, France
    Recruiting
  • CHU Dijon Bourgogne - Hôpital François Mitterrand
    Dijon, France
    Recruiting
  • Service de Médecine vasculaire et HTA - Hôpital Albert Calmette, CHRU de Lille
    Lille, France
    Recruiting
  • Service Médecine interne - CHRU de Lille - Hôpital Claude Huriez
    Lille, France
    Recruiting
  • CHU de Marseille - Hôpital de la Timone
    Marseille, France
    Recruiting
  • Service Médecine Interne - Hôpital Saint-Eloi, CHU de Montpellier
    Montpellier, France
    Recruiting
  • Service de Médecine Interne-Médecine Vasculaire, CHU de Nantes - Hôtel Dieu
    Nantes, France
    Recruiting
  • Unité de neuro-interventionnelle CHU Nice, Hôpital Pasteur 2
    Nice, France
    Recruiting
  • Service de dermatologie, CHU de Nice - Hôpital l'Archet 2
    Nice, France
    Recruiting
  • Service de Neuroradiologie - AP-HP - Paris (Hôpital Lariboisière)
    Paris, France
    Recruiting
  • Service de Lymphologie - Hôpital Cognacq-Jay - Paris
    Paris, France
    Recruiting
  • Service de Cardiologie - Hôpital Bichat, AP-HP
    Paris, France
    Recruiting
  • Service de Neuroradiologie Interventionnelle - Fondation Adolphe de Rothschild
    Paris, France
    Recruiting
  • Service Radiologie-pneumologie interventionnelle - Hôpital Tenon AP-HP
    Paris, France
    Recruiting
  • Service de Génétique CHU de Poitiers
    Poitiers, France
    Recruiting
  • Service de Pneumologie CHU de Rennes - Hôpital Pontchaillou
    Rennes, France
    Recruiting
  • Unité de Génétique médicale, CHU de Rennes, Hôpital Sud
    Rennes, France
    Recruiting
  • Service de Médecine Vasculaire et Thérapeutique, Explorations Fonctionnelles Vasculaires - CHU de Saint-Etienne - Hôpital Nord
    Saint-Etienne, France
    Recruiting
  • Clinique cardiologique et des maladies vasculaires CHU de Nantes, Hôpital G. R. LAENNEC
    Saint-Herblain, France
    Recruiting
  • Service Maladies vasculaires - HTA - NHC Pôle Médico-chirurgicale cardio-vasculaire, CHU de Strasbourg - Hôpital Civil
    Strasbourg, France
    Recruiting
  • CHU de Strasbourg, Hôpital de Hautepierre
    Strasbourg, France
    Recruiting
  • Service de Neuroradiologie Interventionnelle - Hôpital Foch
    Suresnes, France
    Recruiting
  • Service de Cardiologie _ Hôpital des Enfants (Purpan)
    Toulouse, France
    Recruiting
  • Service de Médecine Interne + Service Médecine Vasculaire _ Hôpital RANGUEIL
    Toulouse, France
    Recruiting
  • Service Pneumologie, Hôpital Bretonneau, Centre Hospitalier Régional Universitaire de TOURS
    Tours, France
    Recruiting
  • Service de Médecine interne et immunologie clinique + Service de Médecine Vasculaire - Hôpital Saint André, CHU de Bordeaux
    Bordeaux, France
    Withdrawn
  • CHU de Bordeaux - Groupe Hospitalier Pellegrin Service de Radiologie et de neuro-imagerie
    Bordeaux, France
    Not yet recruiting
  • Service d'imagerie médicale - Neuroradiologie interventionnelle - Hôpital Neurologique P. Wertheimer - HCL
    Bron, France
    Withdrawn
  • Service de neuroradiologie diagnostique et interventionnelle - CHU de Nancy, Hôpital St-Julien
    Nancy, France
    Withdrawn
  • Service Médecine Interne - Médecine vasculaire - CHU de Rouen, Hôpital Charles Nicolle
    Rouen, France
    Withdrawn
  • CHU de Nancy - Hôpitaux de Brabois
    Vandœuvre-lès-Nancy, France
    Withdrawn

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 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.