Patient Involvement in RSV Research: Towards Patients Setting the Research Agenda.

Nicole D Derksen-Lazet, Corline E J Parmentier, J. Wildenbeest, L. Bont
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引用次数: 2

Abstract

Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active patient involvement other than patients participating as study subjects, and most knowledge gained through research only partially reaches the general public. Since 2016, the RSV Patient Advisory Board has officially been involved as an advisory group in the Respiratory Syncytial Virus Consortium in Europe (RESCEU). What started as a small single-center initiative, is now growing towards an international organization providing patient perspectives as inputs to scientists, and improving awareness of RSV. This article summarizes the history, current role, and future aims of the RSV Patient Advisory Board as an advocate to improve patient involvement in research. RSV patients and their representatives are important stakeholders in setting the global research agenda, and educating patients, professionals, and the general public.
RSV研究中的患者参与:走向患者设定研究议程。
呼吸道合胞病毒(RSV)在儿童、老年人和免疫功能低下的成年人中造成严重的疾病负担。对患者参与研究的认识正在逐渐增加。大多数研究都是在没有患者积极参与的情况下进行的,只有患者作为研究对象参与,而且通过研究获得的大多数知识只能部分地传达给公众。自2016年以来,RSV患者咨询委员会已正式作为咨询小组参与欧洲呼吸道合胞病毒联盟(RESCEU)。最初是一个小型的单一中心倡议,现在正在发展成为一个国际组织,为科学家提供患者的观点,并提高对呼吸道合胞病毒的认识。本文总结了RSV患者咨询委员会的历史、当前角色和未来目标,以倡导提高患者参与研究。RSV患者及其代表是制定全球研究议程、教育患者、专业人员和公众的重要利益相关者。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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