Ren Qianli, Wang Jianbin
Department of Medical Imaging, The People's Hospital of Huaibei, Huaibei, Anhui, China.
Intensive Care Unit, The People's Hospital of Huaibei, Huaibei, Anhui, China.
Intractable Rare Dis Res. 2019 Feb;8(1):78-79. doi: 10.5582/irdr.2019.01024.
Rare diseases are an important public health issue and a challenge to healthcare. Over the past few years, China has actively worked to improv rare disease care and orphan drugs for rare diseases, but many challenges still remain. In order to further promote measures to combat rare diseases, the "National Network to Collaborate on Diagnosis and Treatment of Rare Diseases" was established by the National Health Commission of the People's Republic of China on February 12, 2019. This network for collaboration consists of 324 hospitals nationwide, and its aim is to set up a practical mechanism for an effective alliance by different tiers of the healthcare system. The strategy for collaboration includes six programs: ) to establish a mechanism for collaboration, ) to implement standards of care, ) to enhance quality control, ) to ensure the supply of drugs, ) to set up a registry, and ) to enhance clinical research. These programs will play a pivotal role in combating rare diseases in the future and eventually achieving the goal of creating a proper and consistent mechanism to treat and manage rare diseases.
罕见病是一个重要的公共卫生问题,也是医疗保健面临的一项挑战。在过去几年里,中国积极致力于改善罕见病护理及研发罕见病孤儿药,但仍存在许多挑战。为进一步推进罕见病防治措施,中华人民共和国国家卫生健康委员会于2019年2月12日成立了“全国罕见病诊疗协作网”。该协作网络由全国324家医院组成,其目的是建立一个由医疗系统不同层级组成的有效联盟的实用机制。协作策略包括六个项目:(1)建立协作机制;(2)实施护理标准;(3)加强质量控制;(4)确保药品供应;(5)建立登记制度;(6)加强临床研究。这些项目将在未来抗击罕见病以及最终实现建立一个合适且一致的罕见病治疗和管理机制的目标方面发挥关键作用。