Current status of hemophilia in China
ISTH Academy. Song X. Jul 9, 2019; 264637; PB1447 Topic: Hemophilia - Clinical
Xuewen Song
Xuewen Song
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Current Status of Hemophilia in China

X. Song, F. Xue, X. Dou, B. Sun, L. Zhang, R. Yang
Institute of Hematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Tianjin, China

Main Topic: Hemophilia and Bleeding (including Transfusion)
Category: Hemophilia - Clinical

Background: Hemophilia is an X-chromosome linked inherited bleeding disorder characterized by decreasing coagulation factor VIII (Hemophilia A) or factor IX (Hemophilia B). China has a large population with 1.39 billion people in 2018. According to the prevalence of hemophilia published by the World Federation of Hemophilia (WFH), there are about 92,400 patients in China, but the overall disease situation is still unknown.
Aims: To understand the disease profile of patients with hemophilia in China and to improve the management of registration in hemophilia management center.
Methods: The information and clinical data of all hemophilia patients were collected in the National Hemophilia Registration and Management Center of China from 1997 to 2018. The condition of hemophilia patients in China was retrospectively analyzed.
Results: We collected 21,365 patients, including 21047 (98.5%) males, 318 females (1.5%), which contained 54.4% of adults, and 36.8% of children. Among them, 84.4% (n=17735) patients had hemophilia A, 12.7% (n=2674) had hemophilia B, 0.7% (n=138) had vWD patients and 433 (2.06%) had other clotting factors deficiency. Of the hemophilia A patients, there were 12.5% mild, 38.2% moderate and 49.1% severe, and for hemophilia B patients were 14.4%, 44.4%, and 40.7%, respectively. Among all diseases, 25.7% (n=5298) patients had a positive family history of hemophilia, and 29.0% (n=5993) had negative in family history. It was unclear whether they had family history in 45.3% of patients (n=9354).
Conclusions: The work of management and registration of hemophilia in China is still continuing, with the cooperation with WFH and the support from the members of Hemophilia Treatment Center Collaboration Network of China (HTCCNC), most patients have been effectively managed.

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