On the morning of October 18, the Zhejiang University?School of Medicine?received good news from Prof. Eric W. Klee, chair of theUndiagnosed Diseases Network International?(UDNI) Membership Committee, that it will become an official UDNI member. It is the first time that UDNI has approved of a Chinese organization as a clinical member.
Statistics show that there are more than 7,000 rare diseases in China. At a conservative estimate, there are more than 20 million patients suffering fromrare diseases and most of them are undiagnosed. Specifically speaking, undiagnosed rare diseases may include groups of unnamed disorders with common characteristics, phenotypically well described diseases, diseases with an unknown molecular basis or due to unknown, non-genetic factors.Since 2019, the School of Medicine has vigorously promoted the preparatory work for the construction ofthe Chinese Center for Undiagnosed Diseases with a view to improving the diagnosis and treatment of undiagnosed diseases in China via interdisciplinary convergence and cutting-edge multi-group technologyand inspiring pathogenic research into undiagnosed diseases by collecting and sharing standardized and high-quality clinical and research data.??
The UDNI was established in 2015 to meet the demand for an international scientific and healthcare effort to tackle undiagnosed diseases. It has built a consensus framework of principles, best practices and governance; the Board of Directors reflects its international character, as it includes experts from 18 countries, including Australia, Japan and the USA. The requirements for enrollment in the UDNI are extremely rigorously. Applicants need to fulfill extremely rigorous requirements for enrollment in the UDNI in terms of technological platforms, database, candidate patients, development of new technologies and tools, data sharing etc. Each Member should have 5 undiagnosed cases to contribute to the UDNI. Acceptance may be limited to one-year, after which an assessment will be conducted for continuation.