Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

Civil Hospices of Lyon

Status: Enrolling

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

Treatments: Other: Questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT04194619

69HCL19_0380

Details and patient eligibility

About

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.

Enrollment: 400 estimated patients

Sex: Female

Ages: 18 to 45 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• 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.

Exclusion criteria

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