呼吁采取综合方法，提高美国罕见病研究的效率、公平性和可持续性。
A call for an integrated approach to improve efficiency, equity and sustainability in rare disease research in the United States.
机构信息
Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA.
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
出版信息
Nat Genet. 2022 Mar;54(3):219-222. doi: 10.1038/s41588-022-01027-w.
Abstract
To build a more efficient, equitable, and sustainable approach to rare disease research in the United States, we must prioritize integrated research infrastructure and approaches that focus on understanding connections across rare diseases.
摘要
为了建立一个更有效、公平和可持续的美国罕见病研究方法，我们必须优先考虑整合研究基础设施和方法，重点是理解罕见病之间的联系。
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