The aim of this study is to perform a prognostic retrospective follow-up study by collecting data from women with bleeding disorders (including carriers of haemophilia, von Willebrand disease, rare bleeding disorders, platelet disorders) as well as from non-affected women coming from the same socio-economic and cultural background in order to increase our knowledge on the morbidity associated with bleeding disorders in affected women.
The primary goals are:
- To establish an International network of treatment centres - To evaluate the severity and prevalence of bleeding symptoms and gynaecological problems in affected and apparently healthy women - To identify healthy women with menorrhagia and determine if they have a detectable bleeding disorder - To evaluate the available types of treatments for women with bleeding disorders, located in different parts of the world: - To determine the best treatment options to reduce the complications of menorrhagia and others gynaecological problems
These goals will be reached by the analysis of complete and detailed information on clinical history, bleeding symptoms and treatment of women, retrospectively collected by a specially formulated clinical questionnaire (see Annex II). Afterwards, an advisory board will be set up to analyse the data and decide how to proceed with further studies. This working group, formed by experienced epidemiologists, gynaecologists and haematologists, will draw up an international prospective study to address the unsolved issues related to bleeding in women, such as:
- To determine the impact of bleeding disorders on a woman's lifestyle and quality of life - To increase early identification of at-risk and underserved women during adolescence, reproductive age, and perimenopausal age who would benefit from evaluation for bleeding disorders: - To standardise testing to diagnose bleeding disorders - To collaborate with other medical and surgical specialists to coordinate the diagnosis and medical care of bleeding in women - To follow longitudinally the outcomes of enrolled women diagnosed with bleeding disorders to assess the benefits of early detection in intervention - To determine the best treatment options for women with bleeding disorders by assessing non-invasive treatments to reduce the complications of menorrhagia and others gynaecological problems.
How to collaborate with us
The web-site www.rbdd.org will be the contact site where two questionnaires (in word or pdf) can be downloaded. The first collects general information that enables us to learn how many Centres would like to participate and how many women could be enrolled (see Annex I). The second questionnaire (see Annex II) is to collect complete and detailed information regarding clinical history, bleeding symptoms and gynaecological problems of women.
To compare the bleeding symptoms and gynaecological problems between affected and apparently non-affected women, there should be one apparently non-affected control for every patient participating, and they both should