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纳入神经学研究:增强神经疾病患者的权能。

Inclusion in neurological research: empowering people living with neurological diseases.

作者信息

Ferretti Maria Teresa, Uccheddu Maria Bonaria, Flanagan Richelle, Leroi Iracema, Moro Elena

机构信息

Center for Alzheimer Research, Karolinska Institute, Stockholm, Sweden.

Associazione Italiana Miastenia, Milan, Italy.

出版信息

Nat Rev Neurol. 2025 Mar;21(3):159-170. doi: 10.1038/s41582-024-01047-6. Epub 2025 Jan 7.

Abstract

The value of involving people living with diseases in the research process is increasingly recognized by professional associations and regulatory agencies alike. Patient contributions range from disease prevention and diagnosis to medication planning, and from advocacy to guideline production and clinical trial design. Thanks to the efforts of activists and advocates, new models of patient inclusion in medical research are being developed to replace outdated non-participative and tokenistic paradigms. New modalities of patient participation in research - for example, the introduction of patient experts, who work closely with researchers and clinicians - have progressively empowered individuals who are living with diseases. In this Perspective, we provide an overview of the current status of patient involvement in medical research, with a specific focus on neurology. We also discuss the existing and future roles of patient experts in neurological research.

摘要

让疾病患者参与研究过程的价值日益得到专业协会和监管机构的认可。患者的贡献涵盖从疾病预防与诊断到药物治疗规划,以及从宣传倡导到指南制定和临床试验设计等各个方面。多亏了维权人士和倡导者的努力,正在开发新的患者参与医学研究的模式,以取代过时的不参与和象征性的模式。患者参与研究的新模式——例如引入与研究人员和临床医生密切合作的患者专家——逐渐增强了疾病患者的能力。在这篇观点文章中,我们概述了患者参与医学研究的现状,特别关注神经病学领域。我们还讨论了患者专家在神经学研究中的现有及未来作用。

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