NCT04194619

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

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

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 400 (estimated)
• Sponsor: Hospices Civils de Lyon · Academic / Other
• Sex: Female
• Age: 18 Years – 45 Years
• Healthy volunteers: Not accepted

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.

Conditions

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

Interventions

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

Timeline

• Start date: 2020-02-06
• Primary completion: 2027-02-01
• Completion: 2028-11-01
• First posted: 2019-12-11
• Last updated: 2026-03-11

Locations

36 sites across 1 country: France