TY - JOUR
T1 - Patient Involvement in RSV Research
T2 - Towards Patients Setting the Research Agenda
AU - Derksen-Lazet, Nicole D
AU - Parmentier, Corline E J
AU - Wildenbeest, Joanne G
AU - Bont, Louis J
N1 - Funding Information:
This work was supported by the Innovative Medicines Initiative 2 Joint Undertaking (grant number 116019), which in turn receives support from the European Union’s Horizon 2020 Research and Innovation Program and the European Federation of Pharmaceutical Industries and Associations.
Publisher Copyright:
© The Author(s) 2022. Published by Oxford University Press for the Infectious Diseases Society of America. All rights reserved.
PY - 2022/8/1
Y1 - 2022/8/1
N2 - 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.
AB - 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.
KW - Adult
KW - Aged
KW - Child
KW - Europe
KW - Humans
KW - Immunocompromised Host
KW - Patient Participation
KW - Respiratory Syncytial Virus Infections/prevention & control
KW - Respiratory Syncytial Virus, Human
KW - awareness
KW - patient involvement
KW - patient network
KW - patient participation
KW - patient perspective
UR - http://www.scopus.com/inward/record.url?scp=85136340077&partnerID=8YFLogxK
U2 - 10.1093/infdis/jiac110
DO - 10.1093/infdis/jiac110
M3 - Article
C2 - 35485175
SN - 0022-1899
VL - 226
SP - S130-S134
JO - The Journal of infectious diseases
JF - The Journal of infectious diseases
IS - Supplement_1
ER -