BEIJING — The National Health Commission has launched an information system to register the treatment of rare diseases in a bid to promote their diagnosis and treatment.
More than 300 hospitals in a collaborative network on rare diseases are required to register the information of all patients with rare diseases from Nov 1 and finish registering those treated since 2015 by the end of this year.
With the data collected, the diagnosis and treatment service, medical care and access to medicines for rare diseases are expected to be improved, according to Zhang Shuyang, secretary-general of the China Alliance of Rare Diseases.
Misdiagnosis and difficulties surrounding drug use are among the main challenges in diagnosing and treating rare diseases.