Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

Last updated: July 25, 2024
Sponsor: Hospices Civils de Lyon
Overall Status: Active - Recruiting

Phase

N/A

Condition

Abnormal Blood Vessels (Arteriovenous Malformations)

Neurologic Disorders

Connective Tissue Diseases

Treatment

Questionnaire

Clinical Study ID

NCT04194619
69HCL19_0380
  • Ages 18-45
  • Female

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 Criteria

Inclusion

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 vasculardisease before or during pregnancy or one month after delivery.

  • Having been informed of all pertinent aspects of the study and provided oralnon-opposition.

Exclusion

Exclusion Criteria:

  • Any person not fulfilling the inclusion criteria or refusing to take part in thestudy.

  • Major under legal protection

Study Design

Total Participants: 400
Treatment Group(s): 1
Primary Treatment: Questionnaire
Phase:
Study Start date:
February 06, 2020
Estimated Completion Date:
November 30, 2028

Connect with a study center

  • Service de Médecine Interne et Maladies Vasculaires + Service Neuropédiatrie et neurochirurgie de l'enfant - CHU Angers

    Angers, 49933
    France

    Active - Recruiting

  • Service de Médecine interne et immunologie clinique + Service de Médecine Vasculaire - Hôpital Saint André, CHU de Bordeaux

    Bordeaux, 33075
    France

    Active - Recruiting

  • Service Pneumologie et Oncologie Thoracique - AP-HP Hôpital Ambroise Paré

    Boulogne-Billancourt, 92104
    France

    Active - Recruiting

  • Centre de Référence pour la maladie de Rendu-Osler - Service Génétique Clinique - Hôpital Femme-Mère-Enfant - Hospices Civils de Lyon

    Bron, 69677
    France

    Active - Recruiting

  • Service d'Imagerie Pédiatrique et Fœtale et Consultation Pluridisciplinaire des Angiomes - Hôpital Femme-Mère-Enfant - HCL

    Bron, 69677
    France

    Active - Recruiting

  • Service d'imagerie médicale - Neuroradiologie interventionnelle - Hôpital Neurologique P. Wertheimer - HCL

    Bron, 69677
    France

    Active - Recruiting

  • Service de Génétique, Hôpital Femme-Mère-Enfant

    Bron, 69677
    France

    Active - Recruiting

  • Service de Médecine Vasculaire - Hôpital de la Côte de Nacre

    Caen, 14033
    France

    Active - Recruiting

  • Service Médecine Interne Estaing CHU de Clermont-Ferrand - Hôpital d'Estaing

    Clermont-Ferrand, 63000
    France

    Active - Recruiting

  • CHU Dijon Bourgogne - Hôpital François Mitterrand

    Dijon,
    France

    Active - Recruiting

  • Service Médecine interne - CHRU de Lille - Hôpital Claude Huriez

    Lille, 59037
    France

    Active - Recruiting

  • Service de Médecine vasculaire et HTA - Hôpital Albert Calmette, CHRU de Lille

    Lille, 59037
    France

    Active - Recruiting

  • CHU de Marseille - Hôpital de la Timone

    Marseille, 13385
    France

    Active - Recruiting

  • Service Médecine Interne - Hôpital Saint-Eloi, CHU de Montpellier

    Montpellier, 34295
    France

    Active - Recruiting

  • Service de neuroradiologie diagnostique et interventionnelle - CHU de Nancy, Hôpital St-Julien

    Nancy, 54035
    France

    Active - Recruiting

  • Service de Médecine Interne-Médecine Vasculaire, CHU de Nantes - Hôtel Dieu

    Nantes, 44093
    France

    Active - Recruiting

  • Service de dermatologie, CHU de Nice - Hôpital l'Archet 2

    Nice, 06202
    France

    Active - Recruiting

  • Unité de neuro-interventionnelle CHU Nice, Hôpital Pasteur 2

    Nice, 06001
    France

    Active - Recruiting

  • Service Radiologie-pneumologie interventionnelle - Hôpital Tenon AP-HP

    Paris,
    France

    Active - Recruiting

  • Service de Cardiologie - Hôpital Bichat, AP-HP

    Paris, 75018
    France

    Active - Recruiting

  • Service de Lymphologie - Hôpital Cognacq-Jay - Paris

    Paris, 75015
    France

    Active - Recruiting

  • Service de Neuroradiologie - AP-HP - Paris (Hôpital Lariboisière)

    Paris, 75010
    France

    Active - Recruiting

  • Service de Neuroradiologie Interventionnelle - Fondation Adolphe de Rothschild

    Paris, 75019
    France

    Active - Recruiting

  • Service de Génétique CHU de Poitiers

    Poitiers, 86021
    France

    Active - Recruiting

  • Service de Pneumologie CHU de Rennes - Hôpital Pontchaillou

    Rennes, 35033
    France

    Active - Recruiting

  • Unité de Génétique médicale, CHU de Rennes, Hôpital Sud

    Rennes, 35203
    France

    Active - Recruiting

  • Service Médecine Interne - Médecine vasculaire - CHU de Rouen, Hôpital Charles Nicolle

    Rouen, 76000
    France

    Active - Recruiting

  • Clinique cardiologique et des maladies vasculaires CHU de Nantes, Hôpital G. R. LAENNEC

    Saint-Herblain, 44800
    France

    Active - Recruiting

  • Service de Médecine Vasculaire et Thérapeutique, Explorations Fonctionnelles Vasculaires - CHU de Saint-Etienne - Hôpital Nord

    Saint-Étienne, 42055
    France

    Active - Recruiting

  • CHU de Strasbourg, Hôpital de Hautepierre

    Strasbourg, 67200
    France

    Active - Recruiting

  • Service Maladies vasculaires - HTA - NHC Pôle Médico-chirurgicale cardio-vasculaire, CHU de Strasbourg - Hôpital Civil

    Strasbourg, 67091
    France

    Active - Recruiting

  • Service de Génétique Médicale, Hôpital de Hautepierre

    Strasbourg, 67098
    France

    Site Not Available

  • Service de Neuroradiologie Interventionnelle - Hôpital Foch

    Suresnes, 92151
    France

    Active - Recruiting

  • Service de Cardiologie _ Hôpital des Enfants (Purpan)

    Toulouse, 31026
    France

    Active - Recruiting

  • Service de Médecine Interne + Service Médecine Vasculaire _ Hôpital RANGUEIL

    Toulouse, 31059
    France

    Active - Recruiting

  • Service Pneumologie + Service de Dermatologie _ Hôpital Bretonneau Centre Hospitalier Régional Universitaire de TOURS

    Tours,
    France

    Site Not Available

  • Service Pneumologie, Hôpital Bretonneau, Centre Hospitalier Régional Universitaire de TOURS

    Tours, 37044
    France

    Active - Recruiting

  • CHU de Nancy - Hôpitaux de Brabois

    Vandœuvre-lès-Nancy, 54511
    France

    Active - Recruiting

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