Marfan Syndrome Clinical Trial
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, 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.
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