临床儿科杂志 ›› 2022, Vol. 40 ›› Issue (3): 229-234.doi: 10.12372/jcp.2022.22e0186

• 标准·方案·指南 • 上一篇    下一篇

罕见病病例报告写作规范专家共识

《临床儿科杂志》编辑委员会   

  • 收稿日期:2022-02-08 出版日期:2022-03-15 发布日期:2022-03-09
  • 通讯作者: 孙锟 电子信箱:sunkun@xinhuamed.com.cn

Expert consensus on case reporting for rare diseases

Editorial Board of Journal of Clinical Pediatrics   

  • Received:2022-02-08 Online:2022-03-15 Published:2022-03-09

摘要:

目的 制订发表清单以提高罕见病病例报告质量。方法 通过文献复习,制订罕见病病例报告备选发表清单14款48项条目;对备选发表清单条目以背靠背方式征询专家意见。结果 通过实名邀请制方式发放专家意见征询单65份,在限定的时间内收到有效专家意见52份。基于国际病例报告指南CARE清单与专家意见征询结果合并总结,形成13款33项罕见病病例报告发表清单条目,即为罕见病病例报告的最低发表要求。结论 罕见病病例报告信息量有限,进行报道时作者和编辑应核对共识发表清单,注重报道的科学性、完整性和透明性,以提供给读者更多有价值的信息。

关键词: 罕见病, 病例报告, 发表清单

Abstract:

Objective To develop a publication check list to improve the quality of rare disease case reporting. Methods Through literature review, 14 sections and 48 items of the alternative publication list for rare disease case reports were formulated. The experts were back-to-back consulted on the items of the alternative publication list. Results A total of 65 consultation sheets for expert opinion were issued by the real-name system, and 52 valid expert opinions were received within a limited period of time. Based on the combined summary of the CARE list and the results of expert opinions, 13 sections and 33 items of publication check list for rare disease case reporting were formed, which were the minimum publication requirements for rare disease case reporting. Conclusions Authors and editors should check this consensus publication check list when reporting rare diseases and pay attention to the scientificity, integrity, and transparency of reports so as to provide readers with more valuable information.

Key words: rare disease, case reporting, publication check list