Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study
Recruiting now
Conditions studied: Vascular Anomaly, Osler Rendu Disease, Marfan Syndrome or Related, Lymphedema Primary, Arteriovenous Malformations, Cerebrospinal; Disorder
In brief
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.
Key facts
- Study ID
- NCT04194619
- Run by
- Hospices Civils de Lyon
- People needed
- 400
- Starts
- 2020-02-06
- Expected to finish
- 2028-11-01
- Last updated by the study team
- 2026-03-11
Who can join
Age: 18 and older, up to 45. Sex: female. Healthy volunteers: not accepted.
You may qualify if…
- 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.
You may not qualify if…
- Any person not fulfilling the inclusion criteria or refusing to take part in the study.
- Major under legal protection
Where it is running
- Service de Médecine Interne et Maladies Vasculaires + Service Neuropédiatrie et neurochirurgie de l'enfant - CHU Angers — Angers, France (enrolling)
- Service de Neuroradiologie Interventionnelle - Hôpital Foch — Suresnes, France (enrolling)
- Service de Cardiologie _ Hôpital des Enfants (Purpan) — Toulouse, France (enrolling)
- Service de Médecine Interne + Service Médecine Vasculaire _ Hôpital RANGUEIL — Toulouse, France (enrolling)
- Service Pneumologie, Hôpital Bretonneau, Centre Hospitalier Régional Universitaire de TOURS — Tours, France (enrolling)
- Service Pneumologie et Oncologie Thoracique - AP-HP Hôpital Ambroise Paré — Boulogne-Billancourt, France (enrolling)
- Centre de Référence pour la maladie de Rendu-Osler - Service Génétique Clinique - Hôpital Femme-Mère-Enfant - Hospices Civils de Lyon — Bron, France (enrolling)
- Service d'Imagerie Pédiatrique et Fœtale et Consultation Pluridisciplinaire des Angiomes - Hôpital Femme-Mère-Enfant - HCL — Bron, France (enrolling)
- Service de Génétique, Hôpital Femme-Mère-Enfant — Bron, France (enrolling)
- Service de Médecine Vasculaire - Hôpital de la Côte de Nacre — Caen, France (enrolling)
- Service Médecine Interne Estaing CHU de Clermont-Ferrand - Hôpital d'Estaing — Clermont-Ferrand, France (enrolling)
- CHU Dijon Bourgogne - Hôpital François Mitterrand — Dijon, France (enrolling)
- Service de Médecine vasculaire et HTA - Hôpital Albert Calmette, CHRU de Lille — Lille, France (enrolling)
- Service Médecine interne - CHRU de Lille - Hôpital Claude Huriez — Lille, France (enrolling)
- CHU de Marseille - Hôpital de la Timone — Marseille, France (enrolling)
- Service Médecine Interne - Hôpital Saint-Eloi, CHU de Montpellier — Montpellier, France (enrolling)
- Service de neuroradiologie diagnostique et interventionnelle - CHU de Nancy, Hôpital St-Julien — Nancy, France (enrolling)
- Service de Médecine Interne-Médecine Vasculaire, CHU de Nantes - Hôtel Dieu — Nantes, France (enrolling)
- Unité de neuro-interventionnelle CHU Nice, Hôpital Pasteur 2 — Nice, France (enrolling)
- Service de dermatologie, CHU de Nice - Hôpital l'Archet 2 — Nice, France (enrolling)
- Service de Neuroradiologie - AP-HP - Paris (Hôpital Lariboisière) — Paris, France (enrolling)
- Service de Lymphologie - Hôpital Cognacq-Jay - Paris — Paris, France (enrolling)
- Service de Cardiologie - Hôpital Bichat, AP-HP — Paris, France (enrolling)
- Service de Neuroradiologie Interventionnelle - Fondation Adolphe de Rothschild — Paris, France (enrolling)
- Service Radiologie-pneumologie interventionnelle - Hôpital Tenon AP-HP — Paris, France (enrolling)
Full record on ClinicalTrials.gov
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