The new platform, called the National Longitudinal Cohort of Hematological Diseases in China (NICHE), will store clinical data on more than 10,000 people living with blood disorders, such as hemophilia, lymphoma and multiple myeloma, to be able to better evaluate treatment effectiveness, patterns, and safety, help doctors in making therapy decisions, and to inform government policy.
NICHE will start by incorporating data from patients being treated at IHBDH, a clinical and research institute of the Chinese Academy of Medical Sciences and Peking Union Medical College, then gradually expand to gather data from patients at the 140 public hospitals that are part of the China Hematology Alliance.
“Our goal is to set up a world-class hematological research platform that advances the patient-centric study of hematology in China,” Eric Wu, managing principal at Analysis Group, said in a press release. “This is a complex challenge that has not been well addressed in China. We are excited to collaborate with IHBDH on this important undertaking.”
Challenges facing the Chinese healthcare system have affected its ability to evolve in step with the country’s development. Principal among these are the lack of high-quality clinical data, research into the Chinese population, and how people living in that country compare to other populations on issues like diet, genetics, and exposure to pollution.
Without access to country-specific information, physicians and health policies in China are limited in their ability to make well-informed decisions, the release states.
The Analysis Group and the IHBDH created NICHE to compile high-quality, real-world medical data that they hope will serve as the foundation for a more effective and efficient Chinese healthcare system.
“There is a significant gap in the treatment for hematological diseases in China compared to other developed countries. The five-year survival rates of leukemia and lymphoma, for example, are 25% and 37% in China, compared with 62% and 72% in the US. Access to reliable information about patients is a major challenge in treating blood disease in China,” said Tao Cheng, MD, scientific director and deputy president of IHBDH.
“It is our aim to improve the survival rate and improve the quality of life of patients throughout China. Making the right health care decisions that lead to improved patient outcomes requires being able to look at real-world evidence on relevant populations,” said Jianxiang Wang, medical director of IHBDH.
The Analysis Group is working with the IHBDH to assemble a scientific advisory committee composed of experts in blood disorders, health policy, economics, bioinformatics, biotechnology, and biopharma. The committee will be responsible for developing patient selection criteria, coming up with an efficient method of data collection, and implementing good practices for quality control.
NICHE plans to start gathering patient data in January 2020, and making them available to researchers and clinicians by late 2021. Once the platform and its data is established, the IHBDH will start accepting requests from researchers for access to information stored on NICHE.
NICHE is funded by the Chinese Academy of Medical Sciences.