Establishment and Evolution of China National Hemophilia Registry / 罕见病研究

ABSTRACT

Hemophilia is an inherited bleeding disorder and a type of rare disease that is hereditary, lifelong and disabling. The establishment of a National Hemophilia Registry is foundational to treating hemophilia. The initial registry of hemophilia in China was first established using the paper form in 1996 and upgraded to online system in 2007. Following the China's Ministry of Health's decision to establish a national hemophilia case information management system in 2009, China has officially established a National Hemophilia Registry based on previous work. More than 200 hospitals have been involved in this work. The National Hemophilia Registry also provides the basis for the study of hemophilia epidemiology, disease characteristics and related policy formulation.