Thoughts on Selection of Rare Diseases and Prioritized Research Topics

VernacularTitle:罕见病病种遴选与优先主题确定方法的思考
Author: Kexin LI ¹ ; Jingdan CHEN ; Dingding ZHANG ; Wudong GUO ; Jiayin ZHENG ; Linkang LI ; Kun ZHAO ; Shuyang ZHANG
Author Information

1. 中国罕见病联盟北京罕见病诊疗与保障学会,北京 100022
Keywords: rare diseases; disease selection; prioritized topics; multi-criteria decision analysis
From: JOURNAL OF RARE DISEASES 2024;3(2):269-274
CountryChina
Language:Chinese
Abstract: This article combs and summarizes the entire process of rare disease selection and priority theme determination,including the application and preliminary review of rare diseases,standardization of disease theme information,the evaluation methods of evidence sorting and disease selection for priority se-lection of disease themes,and other aspects of the content were analyzed in depth.It is expected to provide reference for the subsequent selection of rare diseases,improve the fairness,rationality and scientificity of rare disease selection,and further promote research and decision-making in China's rare disease-related fields.