Experience in building a cooperative research system for rare diseases: a European perspective
10.3760/cma.j.cn113565-20240117-00020
- VernacularTitle:欧洲罕见病合作研究体系建设的经验
- Author:
Ziyan YUAN
1
;
Yi QIN
;
Huan YIN
;
Ran ZHANG
;
Xiaoyao WEI
;
Yuan YANG
;
Dongping GAO
Author Information
1. 中国医学科学院医学信息研究所图书馆，北京 100020
- Keywords:
Europe;
Rare diseases;
Research experiences;
Systemic construction
- From:
Chinese Journal of Medical Science Research Management
2024;37(5):409-417
- CountryChina
- Language:Chinese
-
Abstract:
Objective:This study aimed to overview the typical practies made by Europe on rare diseases cooperative researches and provide reference for the construction of rare disease research system in China.Methods:Through literature reviews and official website information, this study systematically summarized the contributions and outputs made by the framework of Europe cooperation in rare disease field.Results:Focusing on the needs of patients, the aim of international cooperation was to improve the ability of ″diagnosis, treatment, research and education″. inclnding multi-sourced special funding and project topic screening, expert networks setup and patient impower, research network construction and mutual promotion, information system modernization, etc.Conclusions:The eco-system of rare disease research in China is still under-construction. It is recommended to combine the characteristics of China′s healthcare system, optimize input strategies, empower patients, innovate mechanism, and speed up bioinformation technology.
