join the network (professional only)
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| 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 | |
| First study | |
| the goal of the first study (3 years) will be to address the first described goal | |
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| To evaluate the prevalence of gynaecological problems: | |
 menarche |
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| ovulation bleeding |
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| menorrhagia |
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| bleeding during pregnancy |
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| postpartum bleeding |
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| To evaluate the association between menstrual loss and clinical severity (other bleeding symptoms) |
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| To evaluate the association between laboratory phenotype and clinical severity
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| 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 |
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| To collect and analyse data on concomitant gynaecological abnormalities, complications of menorrhagia (anaemia), requirement of gynaecological intervention |
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| To evaluate the occurrence of abortion, miscarriage and other pregnancy complications in each disorder |
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| Duration of the project | |
| 3 years (2008-2011) | |
| Partners | |
| Principal investigator: | Flora Peyvandi, University of Milan |
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| Data analysis: | Marta Spreafico, Simona Maria Siboni, University of Milan |
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| Supervision: | F.R. Rosendaal, Leiden University of Medicine |
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| 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 | |
| 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 | |
| Danijela Mikovic, Blood Transfusion Institute, Belgrade, Serbia | |
last update 21 october 2009 |
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