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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.

Original publication

DOI

10.1093/infdis/jiac110

Type

Journal article

Journal

J Infect Dis

Publication Date

12/08/2022

Volume

226

Pages

S130 - S134

Keywords

awareness, patient involvement, patient network, patient participation, patient perspective, Adult, Aged, Child, Europe, Humans, Immunocompromised Host, Patient Participation, Respiratory Syncytial Virus Infections, Respiratory Syncytial Virus, Human