Abstract Number: PB0609
Meeting: ISTH 2021 Congress
Background: Although the first reports concerning women with hemophilia date back to the 1950s, not much is known about the real worldwide burden of this hemorrhagic disease in females, the incidence of symptomatic women, their treatment and their quality of life.
Aims: The first aim of our Registry is to establish how many women with hemophilia A and B are actually followed in the different Hemophilia Centers around the world and how many of these are symptomatic. Our secondary aim is to characterize the bleeding to better understand how hemophiliac pathology occurs in the female sex and what are the clinical and psychological outcomes.
Methods: All hemophilia A and B carriers of any age (obligate or geneticall confirmed) can be included in this Registry through the e-CRF reported in the specific RedCap platform. All Hemophilia Centers who treat or have treated women and girls with hemophilia (with and without FVIII/FIX deficiency) are encouraged to participate at our Registry. The e-CRF will be divided into different sections: 1. Demographic; 2. Laboratory; 3. Genetics; 4. Medical history (not related to hemophilia); 5. Clinical history (related to hemophilia; ISTH BAT); 6. Pharmacologic history (related to hemophilia); 7. Quality of life (EQ-5D-5L). Each of the sections will also be divided into several sub-sections. All data will be collected both in retrospective terms (without time limitation) and in prospective terms (from the study start date to the closing date of the data collection).
Results: The Registry has just been activated (February 2021), therefore no data is available yet.
Conclusions: From our registry we expect to answer the difficult questions regarding the complex impact of hemophilia on women, but which can lead to physical and mental disabilities, with a consequent increase in costs for the entire society.
To cite this abstract in AMA style:Pasca S, RS, Grandone E, Zanon E, Othman M. Rationale and Design of the “International Registry on the Symptomatic Hemophilia A/B Carriers” [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 1). https://abstracts.isth.org/abstract/rationale-and-design-of-the-international-registry-on-the-symptomatic-hemophilia-a-b-carriers/. Accessed September 24, 2021.
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