National Study on Pregnancy Outcomes in Women Aged 18 to 45 With Rare Vascular Diseases Including Osler Rendu, Marfan Syndrome, and Arteriovenous Malformations

What this Trial Is About

Researchers are conducting a national prospective study to better understand pregnancy complications among women with rare multisystemic vascular diseases such as Heredity Hemorrhagic Telangiectasia, Marfan syndrome, primary lower limb lymphedema, superficial arteriovenous malformations, and cerebro-spinal arteriovenous malformations. These conditions can cause serious health risks for both mother and baby, and the study aims to improve prevention and reduce mortality by gathering scientific data to inform recommendations. Participants in this observational study will be women aged between 18 and 45 years who are pregnant or have given birth within the last month. The study involves telephone interviews using a questionnaire to collect detailed information about severe and specific obstetrical complications experienced during and after pregnancy. This approach allows researchers to gather prospective data on these rare vascular disorders in pregnancy. Women will be followed every three months for up to 21 months to monitor the occurrence of obstetrical complications. Data collection includes clinical, radiological, or molecular biology diagnoses of the vascular conditions. The study respects participants informed consent and oral non-opposition, with safety and legal considerations accounted for. This follow-up will help researchers understand risks and improve care for pregnant women with these rare vascular anomalies.

Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study