Real‐world analysis of haemophilia patients in China: A single centre’s experience

Haemophilia, 20 May 2020

As part of an effort to advance the understanding of hemophilia in China, Analysis Group consultants have collaborated with researchers from the Institute of Hematology & Blood Diseases Hospital (IHBDH) to leverage China’s first comprehensive blood disease research platform, the National Longitudinal Cohort of Hematological Diseases in China (NICHE), a multi-disease cohort designed to study an array of hematological conditions such as hemophilia, acute myeloid leukemia, lymphoma, and multiple myeloma.

One such study, “Real‐world analysis of haemophilia patients in China: A single centre’s experience” (coauthored by Managing Principal Eric Wu and Manager Jia Zhong, and published in the journal Haemophilia), was conducted to assess the evolution of real-world hemophilia A/B care between 2004 and 2018 for 428 patients treated at China’s largest hematology center. This was the first study in China to use cost data to provide an understanding of the evolution of hemophilia care.

Researchers found a significant improvement in the delay between diagnosis and treatment. This result may be associated with a series of assistance programs, including a 2007 policy change to include hemophilia in the outpatient reimbursement scheme for special diseases; the addition of recombinant FVIII treatment for on-demand use to the National Reimbursement Drug List in 2009; and a 2009 charity assistance project to provide financial support to patients with hemophilia in 29 regions in China. Since then, significant improvement in the treatment of children and adults with hemophilia have been observed. For example, the annual factor consumption of both on-demand and prophylactic treatments increased in both 2009–2013 and 2014–2018, compared to 2004–2008.

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Song X, Liu W, Xue F, Zhong J, Yang Y, Liu Y, Xie, J, Wu E, Zhang L, Shi J, Yang R