project
Aim
To establish an International network of treatment centres in order to perform a prospective follow-up study on women affected by severe haemostatic disorders including von Willebrand disease, rare bleeding disorders, platelet disorders
Primary goals
To evaluate the prevalence of gynaecological problems:
menarche
ovulation bleeding
menorrhagia
bleeding during pregnancy
postpartum bleeding
To evaluate the association between menstrual loss and clinical severity (other bleeding symptoms)
To evaluate the association between laboratory phenotype and clinical severity To determine the best treatment options to reduce the complications of menorrhagia and others gynaecological problems and eventually to understand which proportion of affected women requires regular prophylactic treatment To collect and analyse data on concomitant gynaecological abnormalities, complications of menorrhagia (anaemia), requirement of gynaecological intervention To evaluate the occurrence of abortion, miscarriage and other pregnancy complications in each disorder
Partners Principal investigator: Flora Peyvandi, University of Milan Italy
Data analysis: Marta Spreafico, Simona Maria Siboni, University of Milan, Supervision: F.R. Rosendaal, Leiden University of Medicine
Collaborating partners:Andra H. James, Duke University Medical Center, Durham, NC, USA Rezan Kadir, Royal Free Hospital Hampstead, London UK Christine Lee, Oxford University, UK Magdy El-Ekiaby, Shabrawishi Hospital, Cairo Egypt Peter Kouides, Duke University of Medicine, Durham USA Augusto B. Federici, University of Milan, Italy Jenny Goudemand, Hopital cardiologique, Lille France Annie Borel-Derlon, Hopital Cote de Nacre, Caen, France Giancarlo Castaman, S.Bortolo Hospital, Vicenza Italy Mans Edlund, Gyn Karolinska Hospital, Stockholm Sweden Manijeh Lak, Imam Khomeini Hospital, Tehran Iran Mehran Karimi, University of Medical Sciences, Shiraz Iran Susan Halimeh, Gerinnungszentrum Rhein-Ruhr Centre - Duisburg, Germany Danijela Mikovic, Blood Transfusion Institute, Belgrade, Serbia
