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Updated: May 27, 2025

In Vivo Functional Study of Disease-associated Rare Human Variants Using Drosophila
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Published on: August 20, 2019

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捕捉现实世界罕见疾病患者的旅程:当前的方法论是否足以做出明智的医疗保健决策?

Kristen A Cribbs1,2, Lucas T A Blackmore1, Asia R Banks2

  • 1Alkemi LLC, Manchester Center, Vermont, USA.

Journal of evaluation in clinical practice
|February 17, 2025
PubMed
概括

了解罕见疾病患者的旅程是有限的. 这次审查发现,大多数研究都侧重于诊断,治疗坚持和护理人员负担存在差距,突出了对纵向研究的需求.

关键词:
方法 方法 方法 方法.评估患者的结果评估.罕见的疾病 罕见的疾病系统性审查 系统性审查

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