The General Office of the National Healthcare Commission ("NHC") has recently issued the Circular on Initiating the Registration of Information on Diagnosis and Treatment in Rare Disease Cases (the "Circular").
The Circular sets forth requirements in three respects. First, high attention shall be paid to the registration of information on diagnosis and treatment in rare disease cases. Second, effective work on organization and management shall be ensured. Administrative departments of health at all levels shall designate the departments in-charge and the responsible persons (provincial-level administrators of the information system), to take charge of management of information registration within the local administrative region. Third, information registration and routine management shall be carried out effectively. All member hospitals within the network for collaboration in diagnosis and treatment of rare diseases shall launch the registration of information on rare disease cases from November 1, 2019. For disease cases in which patients are diagnosed and treated between January 1, 2015 and October 31, 2019, the information registration should be completed by December 31, 2019; in case of any new cases where rare diseases are confirmed, arising on November 1, 2019 and thereafter, the information registration should be completed on a case-by-case basis. Fourth, sound efforts shall be made in information application and safety management. Hospitals subject to the information registration are encouraged to have their own systems connected with the information system, so as to make possible automatic information submission which will not only eases their work load but also improves data quality.