Patient engagement and involvement in rare disease research

被引：0
|
作者：
O'Boyle, Megan [1 ]
机构：
[1] Global Genes, RARE X Data Collect Program, Aliso Viejo, CA 92656 USA
来源：
COMMUNICATIONS MEDICINE | 2023年 / 3卷 / 01期
关键词：
D O I：
10.1038/s43856-023-00251-7
中图分类号：
R-3 [医学研究方法]; R3 [基础医学];
学科分类号：
1001 ;
摘要：
Megan O'Boyle is the parent of a 22-year-old daughter with a rare neurodevelopmental disease. She is currently the Patient Engagement Lead of the RARE-X Data Collection Program at Global Genes, a collaborative platform for global data sharing and analysis created to accelerate treatments for rare diseases. In this Q&A, we ask Megan a series of questions on patient engagement and involvement in rare disease research.
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