NCT04194619From ClinicalTrials.govRecruiting

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

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

Vascular Anomaly
Osler Rendu Disease
Marfan Syndrome or Related
Lymphedema Primary
Arteriovenous Malformations
Cerebrospinal; Disorder

At a glance

Phase: Phase not stated
Study type: Observational
Sponsor: Hospices Civils de Lyon
Enrolment target: 400
Started: 6 February 2020
Main results due: February 2027
Study sites: 37
Registry updated: 28 September 2026

Can you take part?

Ages 18 years to 45 years.
Women only.
You need the condition being studied — healthy volunteers are not accepted.

These are the headline rules only. Every study has a longer list, and whether you are eligible is decided by the research team at the site — never by this page.

Read the full eligibility 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

What this study is about

In the sponsor’s own words, from the registry.

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.

Study sites(37)

Service de Médecine Interne et Maladies Vasculaires + Service Neuropédiatrie et neurochirurgie de l'enfant - CHU Angers
Angers, 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 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 médicale - Neuroradiologie interventionnelle - Hôpital Neurologique P. Wertheimer - HCL
Bron, France
Withdrawn
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
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 neuroradiologie diagnostique et interventionnelle - CHU de Nancy, Hôpital St-Julien
Nancy, France
Withdrawn
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 Médecine Interne - Médecine vasculaire - CHU de Rouen, Hôpital Charles Nicolle
Rouen, France
Withdrawn
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
CHU de Nancy - Hôpitaux de Brabois
Vandœuvre-lès-Nancy, France
Withdrawn

Showing 37 of 37 sites. 31 of the 37 sites on this study are recruiting right now — a site can stop enrolling while the study as a whole is still open.

Source: ClinicalTrials.gov record NCT04194619. Trialion does not run this study, is not paid to refer anyone to it, and cannot enrol you. Eligibility is always decided by the research team at the site.

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