Pregnancy in Women With Rare Multisystemic Vascular Diseases: COGRare5 Study

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.

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Key information

Conditions

Vascular Anomaly Abnormalities, Multiple Arteriovenous Malformations Bone Diseases Bone Diseases, Developmental Cardiovascular Abnormalities Cardiovascular Diseases Central Nervous System Diseases Cerebrospinal; Disorder Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Connective Tissue Diseases Genetic Diseases, Inborn Heart Defects, Congenital Heart Diseases Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhagic Disorders Hemostatic Disorders Lymphatic Diseases Lymphedema Lymphedema Primary Marfan Syndrome Marfan Syndrome or Related Musculoskeletal Diseases Nervous System Diseases Osler Rendu Disease Skin and Connective Tissue Diseases Telangiectasia, Hereditary Hemorrhagic Telangiectasis Vascular Diseases Vascular Malformations

Age range

18 year–45 year

Sex eligibility

Female

Study type

Observational

Primary location

Service de Médecine Interne et Maladies Vasculaires + Service Neuropédiatrie et neurochirurgie de l'enfant - CHU Angers, Angers, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Questionnaire

Other

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

Primary outcomes

Occurrence of obstetrical complications among patients with rare vascular anomalies.

Time frame: Every 3 months up to 21 months

The primary outcome measure is the occurrence of specific and serious obstetrical complications during the pregnancy period and and after 12 months among patients with rare vascular anomalies, obtained via phone questionnaire.

Study contacts

Contact information is provided by the study sponsor or research team.

Amal AYADI ROBERT

CONTACT

[email protected]

04 27 85 66 03 ext. +33

Sophie DUPUIS-GIROD, MD

CONTACT

[email protected]

04 27 85 65 25 ext. +33

Sponsors and collaborators

Lead sponsor

Hospices Civils de Lyon

Other

Registry information

Official study title

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

Acronym: COGRare5

Important dates

Study start: 2020
Primary completion: 2027
Study completion: 2028
First posted: Dec 11, 2019
Registry last updated: Mar 11, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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