Save
Current status of hemophilia in China
ISTH Academy. Song X. Jul 9, 2019; 264637; PB1447
Xuewen Song
Xuewen Song
Access to Reserved content is available to attendees of the Congress until the end of the year and always available for full ISTH members.

Click here to join ISTH or renew your membership.

Abstract
Discussion Forum (0)
Rate & Comment (0)

PB1447

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.

Code of conduct/disclaimer available in General Terms & Conditions
Anonymous User Privacy Preferences

Strictly Necessary Cookies (Always Active)

MULTILEARNING platforms and tools hereinafter referred as “MLG SOFTWARE” are provided to you as pure educational platforms/services requiring cookies to operate. In the case of the MLG SOFTWARE, cookies are essential for the Platform to function properly for the provision of education. If these cookies are disabled, a large subset of the functionality provided by the Platform will either be unavailable or cease to work as expected. The MLG SOFTWARE do not capture non-essential activities such as menu items and listings you click on or pages viewed.


Performance Cookies

Performance cookies are used to analyse how visitors use a website in order to provide a better user experience.



Google Analytics is used for user behavior tracking/reporting. Google Analytics works in parallel and independently from MLG’s features. Google Analytics relies on cookies and these cookies can be used by Google to track users across different platforms/services.


Save Settings