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.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 45 Years |
| Sex | Women only |
| Enrollment | 400 (estimated) |
| Sponsor | Hospices Civils de Lyon Academic / other |
| Locations | 37 sites (Angers and 36 other locations) |
| Status | Recruiting |
| Started | February 6, 2020 |
| Main results expected | February 2027 |
| Study ends | November 2028 |
| Registry record updated | September 28, 2026 |
| Trial ID | NCT04194619 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
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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
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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
- Principal investigator: Sophie DUPUIS-GIROD, MD — Service de Génétique - Hôpital Femme-Mère-Enfant - HCL
- Study coordinator: Sophie DUPUIS-GIROD, MD
- Email: sophie.dupuis-girod@chu-lyon.fr
- Phone: 04 27 85 65 25
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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.