China launched a pilot project to improve its rare disease healthcare levels
China launched a pilot project to improve its rare disease healthcare levels
复制标题
DOI：
10.1186/1750-1172-9-14
复制
发表时间：
2014-01-27
影响因子：
3.7
通讯作者：
Han, Jinxiang
中科院分区：
文献类型：
--
作者：
Cui, Yazhou;Zhou, Xiaoyan;Han, Jinxiang
中国正面临着为世界上最大的罕见病人群服务的巨大挑战。在中国现有的临床服务结构下，有必要制定具体的医疗计划，以提高罕见病的最佳预防、诊断和治疗水平。2013年，中国启动了首个针对20种代表性罕见病的试点项目。一个包括大约100个省级或市级医疗中心在内的全国网络已经建立，以便在中国各地开展罕见病合作。该项目的主要目标是制定和应用罕见病的医疗指南和临床途径，建立罕见病患者登记和数据存储系统，促进罕见遗传疾病的分子检测。该项目还强调在协作网络、基本医疗服务机构一线临床医生和罕见病患者组织之间建立密切联系。首先，该项目期望在五年内制定一项可操作的医疗服务计划，以增加中国罕见病患者和家庭的优质医疗服务。
China is facing the great challenge of serving the world's largest rare disease population. It is necessary to develop a specific medical plan to increase the levels of optimal prevention, diagnosis and treatment of rare diseases under the existing clinical service structures in China. In 2013, China launched its first pilot project focused on 20 representative rare diseases. A national network including approximately 100 provincial or municipal medical centers has been established to enable collaboration on rare diseases across China. The main objectives for this project are to develop and apply medical guidelines and clinical pathways for rare diseases, to establish a rare disease patient registry and data repository system, and to promote molecular testing for rare genetic disorders. This project also emphasizes building close links among the collaborative network, clinicians on the frontlines in basic medical services institutions and rare disease patient organizations. Primarily, this project expects to develop an actionable medical services plan to increase the delivery of quality healthcare for individuals and families living with rare diseases in China within five years.