Ireland
--:--IST
Recruiting Observational

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

NCT04194619 · tracked via the Priya Life Science France tracker
Phase
Observational
Started
2020-02-06
Last updated
2026-09-28

Condition(s) studied

Vascular AnomalyOsler Rendu DiseaseMarfan Syndrome or RelatedLymphedema PrimaryArteriovenous MalformationsCerebrospinal; Disorder

Investigational drug(s) / intervention(s)

Questionnaire

Questionnaire: Interview of women with a rare vascular disease through a phone questionnaire about severe and specific obstetrical complications during and after pregnancy.

Study summary

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.

Eligibility

Sex
FEMALE
Min age
18 Years
Max age
45 Years
Healthy volunteers
No
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

Primary outcome measure(s)

  • Occurrence of obstetrical complications among patients with rare vascular anomalies. — Every 3 months up to 21 months
    The primary outcome measure is the occurrence of specific and serious obstetrical complications during the pregnancy period and and after 12 months among patients with rare vascular anomalies, obtained via phone questionnaire.

Trial sites (37)

FacilityCityRegionStatus
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
Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT04194619 on ClinicalTrials.gov ↗ ← All trials in France