Cui Yazhou, Han Jinxiang
Shandong Academy of Medical Science, Shandong Medical Biotechnological Center, Key Laboratory for Biotech Drugs of the Ministry of Health, Ji'nan, China.
Intractable Rare Dis Res. 2017 May;6(2):148-149. doi: 10.5582/irdr.2017.01009.
China has the world's largest population of people with rare diseases. However, defining rare diseases remains a challenge in China. Over the past few decades, several definitions have been proposed but they have yet to be agreed to by all stakeholders. To overcome this impasse, a list of several rare diseases has recently been created. This rare disease list might be used in place of a prevalence-based definition, especially in healthcare policy-making.
中国是世界上罕见病患者人数最多的国家。然而，在中国，罕见病的定义仍是一项挑战。在过去几十年里，人们提出了几种定义，但尚未得到所有利益相关者的认可。为克服这一僵局，最近制定了一份包含多种罕见病的清单。这份罕见病清单可能会被用来取代基于患病率的定义，尤其是在医疗保健政策制定方面。
