Arteriovenous Malformations, Cerebrospinal; Disorder, Lymphedema Primary, Marfan Syndrome or Related, Osler Rendu Disease, Vascular Anomaly
Conditions
Brief 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.
Interventions
OTHERQuestionnaire
Interview of women with a rare vascular disease through a phone questionnaire about severe and specific obstetrical complications during and after pregnancy.
Sponsors
Hospices Civils de Lyon
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
FEMALE
Age
18 Years to 45 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Occurrence of obstetrical complications among patients with rare vascular anomalies. | 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. |
Countries
France
Contacts
CONTACTSophie DUPUIS-GIROD, MD
CONTACTAmal AYADI ROBERT
PRINCIPAL_INVESTIGATORSophie DUPUIS-GIROD, MD
Service de Génétique - Hôpital Femme-Mère-Enfant - HCL
Outcome results
None listed