Case Background
In recent years, national policies on rare diseases have been issued frequently, and great emphasis has been placed on the registration and related processing of rare disease diagnostic and treatment information.
The establishment of an information system to collect relevant data facilitates the understanding of the study of epidemiology, clinical diagnosis and treatment, as well as the status of medical insurance of rare diseases in China. The information system also provides a scientific basis for formulating population intervention strategy, improving the system of diagnosis and treatment services, the standards of medical insurance of patients, and drug accessibility.