Screening study of 2017 Chinese rare disease survey list based on expert consensus
10.3760/cma.j.issn.1006-1924.2018.04.006
- VernacularTitle:基于专家共识法的中国2017版罕见病调研清单筛选研究
- Author:
Xinmiao SHI
1
;
Yan LI
;
Siyan ZHAN
;
Lin WANG
;
Zhaoxia WANG
;
Hui LIU
;
Jie DING
Author Information
1. 100034,北京大学第一医院儿科
- Keywords:
Big data;
Expert consensus;
Rare disease;
Survey
- From:
Chinese Journal of Medical Science Research Management
2018;31(4):260-264
- CountryChina
- Language:Chinese
-
Abstract:
Objective To preliminary formulated 2017 Chinese rare disease survey list by experts consensus.Methods By using checklist methods,we selected studied diseases from five available rare disease data sources in China.By summarizing,proofreading,removing of duplicate data,the primary survey list with 344 diseases was formulated.By organizing two rounds of consensus conferences,experts voted and revised the survey list,then ultimately formulated 2017 Chinese rare disease survey list.Results According to the poll,in selected 344 rare diseases which were discussed in consensus conferences,54 diseases were suggested to be deleted,9 pairs of diseases were suggested to be incorporated.For Chinese and English names of these rare diseases,306/344 diseases conform to nomenclature by discussion.According to the experts' tips and advice,we revised the primary survey list and ultimately formulated 2017 Chinese rare disease survey list including 281 diseases.Conclusions Experts consensus combines the scientificity of methodology and clinical experience of experts.In the background of medical big data and targeted poverty alleviation,the early stage of study is in accordance with the main stream of thought for the national survey of rate disease in China.
