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Vascular AnomalyCOGRare5NCT04194619

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

An observational study of Vascular Anomaly and Osler Rendu Disease, run by Hospices Civils de Lyon at 37 sites in France.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record

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Trial 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… Read more about this study

Who is it for?
Ages 18 to 45 years, women only
What is being tested?
Questionnaire
How many people
400 participants
Where
37 sitesFrance
Study dates
6 Feb 2020to Nov 2028
Phase
Observational

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 to 45 years
  • Women only
  • No healthy volunteers
  • Adult

Study population: This study describes severe and specific obstetrical complications during and after pregnancy (until 12 months postpartum) for the following pathologies: heredity hemorrhagic telangiectasia, marfan syndrome or related, primary lower limb lymphedema, superficial arteriovenous malformations or even cerebro-spinal arteriovenous malformations.

Who may be able to join

  • 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.

Who cannot join

  • Any person not fulfilling the inclusion criteria or refusing to take part in the study.
  • Major under legal protection

Trial locations and contacts

37 sites in 1 country. Contact the study team or a site near you to ask about taking part.

Sophie DUPUIS-GIROD, MD contact

04 27 85 65 25 ext. +33

sophie.dupuis-girod@chu-lyon.fr

Amal AYADI ROBERT contact

04 27 85 66 03 ext. +33

amal.ayadi@chu-lyon.fr

37 sites in 1 country

France37 sites, 32 recruiting

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

    Angers, 49933

    Christian LAVIGNE, Dr, 02 41 35 77 00 ext. +33, chlavigne@chu-angers.fr

    Matthieu DELION, Dr, 02 41 35 48 21 ext. +33, madelion@chu-angers.fr

    Recruiting

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

    Bordeaux, 33075

    Withdrawn

  • CHU de Bordeaux - Groupe Hospitalier Pellegrin Service de Radiologie et de neuro-imagerie

    Bordeaux, 33076

    Xavier BARREAU, Dr, 05 40 45 12 00 ext. +33, xavier.barreau@chu-bordeaux.fr

    Xavier BARREAU, Dr

    Not yet recruiting

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

    Boulogne-Billancourt, 92104

    Sandra BLIVET, MD, 01 49 09 44 32 ext. +33, Sandra.blivet@aphp.fr

    Sandra BLIVET, MD

    Recruiting

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

    Bron, 69677

    Sophie DUPUIS-GIROD, 04 27 85 65 25 ext. +33, sophie.dupuis-girod@chu-lyon.fr

    Amal AYADI ROBERT, 04 27 85 66 03 ext. +33, amal.ayadi@chu-lyon.fr

    Recruiting

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

    Bron, 69677

    Withdrawn

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

    Bron, 69677

    Laurent GUIBAUD, Pr, 04 27 85 57 72 ext. +33, laurent.guibaud@chu-lyon.fr

    Recruiting

  • Service de Génétique, Hôpital Femme-Mère-Enfant

    Bron, 69677

    Alexandre GUILHEM, MD, 04 27 85 65 25 ext. +33, alexandre.guilhem@chu-lyon.fr

    Alexandre GUILHEM

    Recruiting

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

    Caen, 14033

    Laurent CHAUSSAVOINE, MD, 02 31 06 53 27 ext. +33, chaussavoine-l@chu-caen.fr

    Damien LANEELLE, MD

    Recruiting

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

    Clermont-Ferrand, 63000

    Vincent GROBOST, MD, 04 73 75 00 85 ext. +33, vgrobost@chu-clermontferrand.fr

    Vincent GROBOST, MD

    Recruiting

  • CHU Dijon Bourgogne - Hôpital François Mitterrand

    Dijon

    Vanessa LEGUY-SEGUIN, MD, 03 80 29 34 32 ext. +33, alexandre.guilhem@chu-dijon.fr

    Laurence OLIVIER-FAIVRE, MD-PhD

    Recruiting

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

    Lille, 59037

    Pascal DELSART, MD, 03 20 44 43 65 ext. +33, Pascal.DELSART@CHRU-LILLE.FR

    Pascal DELSART, MD

    Recruiting

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

    Lille, 59037

    Hélène MAILLARD, MD, 03 20 44 50 48 ext. +33, Helene.MAILLARD@CHRU-LILLE.FR

    Marc LAMBERT, MD

    Recruiting

  • CHU de Marseille - Hôpital de la Timone

    Marseille, 13385

    Baptiste ANDRE, MD, 04 91 38 89 90 ext. +33, baptiste.andre@aphm.fr

    Anthony REYRE, MD-PhD

    Recruiting

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

    Montpellier, 34295

    Sophie RIVIERE, MD, 04 67 33 73 32 ext. +33, s-riviere@chu-montpellier.fr

    Sophie RIVIERE, MD

    Recruiting

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

    Nancy, 54035

    Withdrawn

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

    Nantes, 44093

    Olivier ESPITIA, MD, 02 40 08 33 55 ext. +33, olivier.espitia@chu-nantes.fr

    Olivier ESPITIA, MD

    Recruiting

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

    Nice, 06001

    Jacques SEDAT, MD, 04.92.03.38.07 ext. +33, nri@chu-nice.fr

    Jacques SEDAT, MD

    Recruiting

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

    Nice, 06202

    Christine CHIAVERINI, MD, 04.92.03.92.11 ext. +33, chiaverini.c@chu-nice.fr

    Christine CHIAVERINI, MD

    Recruiting

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

    Paris, 75010

    Annouk BISDORFF-BRESSON, MD, 01 49 95 83 59 ext. +33, annouk.bisdorff@aphp.fr

    Annouk BISDORFF-BRESSON, MD

    Recruiting

  • Service de Lymphologie - Hôpital Cognacq-Jay - Paris

    Paris, 75015

    Stéphane VIGNES, MD, 01 45 30 81 83 ext. +33, stephane.vignes@cognacq-jay.fr

    Stéphane VIGNES, MD

    Recruiting

  • Service de Cardiologie - Hôpital Bichat, AP-HP

    Paris, 75018

    Guillaume JONDEAU, MD-PhD, 01 40 25 68 11 ext. +33, guillaume.jondeau@aphp.fr

    Guillaume JONDEAU, MD-PHd

    Recruiting

  • Service de Neuroradiologie Interventionnelle - Fondation Adolphe de Rothschild

    Paris, 75019

    William BOISSEAU, MD, 01 48 03 68 31 ext. +33, wboisseau@for.paris

    William BOISSEAU, MD

    Recruiting

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

    Paris

    Michel DJIBRE, MD, 01 56 01 76 29 ext. +33, michel.djibre@aphp.fr

    Michel DJIBRE, MD

    Recruiting

  • Service de Génétique CHU de Poitiers

    Poitiers, 86021

    Xavier LE GUILLOU-HORN, MD, 05 49 44 39 22 ext. +33, xavier.le-guillou@chu-poitiers.fr

    Xavier LE GUILLOU-HORN, MD

    Recruiting

  • Service de Pneumologie CHU de Rennes - Hôpital Pontchaillou

    Rennes, 35033

    Mallorie KERJOUAN, MD, 02 99 28 37 38 ext. +33, mallorie.kerjouan@chu-rennes.fr

    Mallorie KERJOUAN, MD

    Recruiting

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

    Rennes, 35203

    Sylvie ODENT, MD-PhD, 02 99 26 67 44 ext. +33, sylvie.odent@chu-rennes.fr

    Sylvie ODENT, MD-PhD

    Recruiting

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

    Rouen, 76000

    Withdrawn

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

    Saint-Etienne, 42055

    Claire LE HELLO, MD-PhD, 04.77.82.94.24 ext. +33, claire.lehello@chu-st-etienne.fr

    Claire LE HELLO, MD-PhD

    Recruiting

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

    Saint-Herblain, 44800

    Laurianne LE GLOAN, MD, 02 40 08 33 33 ext. +33, laurianne.legloan@chu-nantes.fr

    Laurianne LE GLOAN, MD

    Recruiting

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

    Strasbourg, 67091

    Dominique STEPHAN, MD-PhD, 03 69 55 05 36 ext. +33, dominique.stephan@chru-strasbourg.fr

    Dominique STEPHAN, MD-PhD

    Recruiting

  • CHU de Strasbourg, Hôpital de Hautepierre

    Strasbourg, 67200

    Murielle RONDEAU-LUTZ, MD, 03 88 12 81 25 ext. +33, murielle.rondeau-lutz@chru-strasbourg.fr

    Murielle RONDEAU-LUTZ, MD

    Recruiting

  • Service de Neuroradiologie Interventionnelle - Hôpital Foch

    Suresnes, 92151

    Georges RODESCH, MD, 01 46 25 26 60 ext. +33, g.rodesch@hopital-foch.org

    Georges RODESCH, MD

    Recruiting

  • Service de Cardiologie _ Hôpital des Enfants (Purpan)

    Toulouse, 31026

    Yves DULAC, MD, 05 34 55 85 96 ext. +33, dulac.y@chu-toulouse.fr

    Yves DULAC, MD

    Recruiting

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

    Toulouse, 31059

    Laurent ALRIC, MD-PhD, 05 61 32 35 95 ext. +33, alric.l@chu-toulouse.fr

    Alessandra BURA-RIVIERE, Pr, 05 61 32 24 38 ext. +33, bura-riviere.a@chu-toulouse.fr

    Recruiting

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

    Tours, 37044

    Pascal MAGRO, MD, 02 47 47 37 87 ext. +33, magro@med.univ-tours.fr

    Pascal MAGRO, MD

    Recruiting

  • CHU de Nancy - Hôpitaux de Brabois

    Vandœuvre-lès-Nancy, 54511

    Withdrawn

Other trials in France

About this study

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

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.

Being tested
Questionnaire
Medical subject headings
Vascular Malformations, Telangiectasia, Hereditary Hemorrhagic, Marfan Syndrome, Lymphedema, Arteriovenous Malformations, Central Nervous System Diseases

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • QuestionnaireOther

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

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Occurrence of obstetrical complications among patients with rare vascular anomalies.

    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.

    Measured: Every 3 months up to 21 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted11 Dec 2019
  2. Study start6 Feb 2020
  3. Primary completionFeb 2027 (estimated)
  4. Study completionNov 2028 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
400 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04194619
Sponsor's protocol ID
69HCL19_0380
Acronym
COGRare5
Status last verified
Mar 2026
First submitted
9 Dec 2019
Last updated
28 Sep 2026
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No

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