Analysis Group, a global leader in health economics and outcomes research (HEOR), and the Institute of Hematology & Blood Diseases Hospital (IHBDH), a clinical and research institute of the Chinese Academy of Medical Sciences and Peking Union Medical College, will partner to create China’s first comprehensive blood disease research platform. The platform – the National Longitudinal Cohort of Hematological Diseases in China (NICHE) – will contain information from more than 10,000 patients across China, creating the foundation needed to evaluate treatment patterns, effectiveness, and safety; facilitate clinical decision making; and inform health policies and regulatory and reimbursement decisions.
Analysis Group will work closely with IHBDH to design, build, and maintain the platform, which will contain comprehensive inpatient and outpatient data covering acute myeloid leukemia, lymphoma, multiple myeloma, hemophilia, pediatric hematological diseases, and other blood diseases. Researchers will begin populating the platform with information from patients from IHBDH and eventually expand across the China Hematology Alliance’s 140 public hospitals from the country’s 30 provinces, representing the largest longitudinal hematological cohort from which real-world evidence has been generated.
“Our goal is to set up a world-class hematological research platform that advances the patient-centric study of hematology in China,” said Eric Wu, managing principal at Analysis Group. “This is a complex challenge that has not been well addressed in China. We are excited to collaborate with IHBDH on this important undertaking.”
Lack of high-quality medical data remains the most significant roadblock to the rapid evolution of China’s health care system. Genetic makeup, dietary factors, pollutant exposure, and cultural differences create a unique set of challenges that make comparisons to other populations around the world unreliable for understanding and combating blood disease in China. Without such information, clinicians are limited in how they can treat patients efficiently and policy makers are limited in their decision making. Together, Analysis Group and IHBDH aim to remove this obstacle by compiling real-world evidence that can serve as the foundation for facilitating the process of making these important decisions.
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“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, M.D., 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.
Ongoing work on the project includes assembling a scientific advisory committee to help steer the platform design and data collection. The committee will help address key questions related to patient selection criteria, the creation of a standardized data model, the efficient collection of information, and quality-control best practices. Committee members will consist of experts in hematological diseases, health policy, health economics, epidemiology, biostatistics, bioinformatics, biotechnology, and biopharma.
The information-gathering process will begin in January 2020, with the goal of making the research platform accessible for study by the end of 2021. Once NICHE is populated, IHBDH will begin accepting research requests to access the information.
Source: BioSpace
