The Hemostasis and Thrombosis Research Society (HTRS) Registry Study of Acquired Hemophilia: Assessment of AH Patient Demographics in the US

• Published in: Blood 2012-11, Vol.120 (21), p.4625-4625
• Main Authors: Kessler, Craig M., Ma, Alice D., Al-Mondhiry, Hamid A B, Fisher, Margaret, Gut, Robert Z., Cooper, David L.
• Format: Article
• Language: English
• ISSN: 0006-4971; 1528-0020
• DOI: 10.1182/blood.V120.21.4625.4625

Abstract 4625 Acquired hemophilia (AH) is a rare disorder marked by the development of autoantibodies to factor VIII. Patients present with bleeding and a prolonged aPTT that does not correct with prolonged incubation mixing with normal plasma. The Hemophilia Research Society (HRS) Registry was established in 1999 to support the research needs of the society and to monitor post-approval usage of recombinant factor VIIa (rFVIIa). In 2004, the registry was renamed the Hemophilia and Thrombosis Research Society (HTRS) Registry. Since FDA approval of rFVIIa, the HTRS registry has been used to collect demographic and treatment information on US patients with AH. Following IRB approval, informed consent was obtained prior to data entry. AH patient registration captured age, gender, comorbidities and predisposing conditions, first bleeding location, laboratory parameters, blood product/factor/bypassing agent exposure, and initiation of immune suppression/tolerance. HRS patient records were incorporated into the HTRS registry platform and combined here for descriptive analysis. Of 166 identified AH patients (83 female, 72 male), 21 were entered in HRS (2000–2003) and 145 in HTRS (2004–2011). The mean/median age was 65.3/70 with 3 aged