由授权患者推动的罕见疾病研究：通过社交媒体解决斑马难题。
Rare disease research powered by empowered patients: solving the zebra puzzle through social media.
发表日期：2023 Apr 03
作者：
Gilberto Morgan, Vivek Subbiah
来源：
CANCER
摘要：
社交媒体平台如Facebook和Twitter已经彻底改变了罕见疾病研究，并促进了罕见癌症患者之间的联系。来自生殖细胞瘤幸存姐妹Facebook小组的一项新研究提供了自然形成的患者团体协助研究人员开发证据基础并支持患者的实用性证据。这样的研究是罕见疾病研究的第一步，由社交媒体赋权的患者通过解决斑马罕见疾病谜题实施。©2023美国癌症协会。
Social media platforms like Facebook and Twitter have revolutionized rare disease research and have catalyzed the connection among patients with rare cancers. A new study from the Germ Cell Tumor Survivor Sisters Facebook group provides evidence of the utility of naturally forming patient groups assisting researchers with developing the evidence base for care and supporting those living with the disease. Such studies are the first steps in rare disease research powered by empowered patients by solving the zebra rare disease puzzle through social media.© 2023 American Cancer Society.