Perspectives of European Patient Advocacy Groups on Volunteer Registries and Vaccine Trials: VACCELERATE Survey Study Article Swipe
Sophia Themistocleous
,
Christos D. Argyropoulos
,
Paris Vogazianos
,
George Shiamakkides
,
Evgenia Noula
,
Andria Nearchou
,
Andreas Yiallouris
,
Charalampos Filippou
,
Fiona Stewart
,
Markela Koniordou
,
Ioannis Kopsidas
,
Helena Hervius Askling
,
Sirkka Vene
,
Amandine Gagneux‐Brunon
,
Jana Baranda
,
Elena Álvarez
,
Jon Salmanton‐García
,
Janina Leckler
,
Alan Macken
,
Ruth Joanna Davis
,
Anna Maria Azzini
,
Charis Armeftis
,
Margot Hellemans
,
Romina Di Marzo
,
Catarina Luís
,
Ole F. Olesen
,
Olena Valdenmaiier
,
Stine Finne Jakobsen
,
Pontus Nauclér
,
Odile Launay
,
Patrick Mallon
,
Jordi Ochando
,
Pierre Van Damme
,
Evelina Tacconelli
,
Theoklis E. Zaoutis
,
Oliver A. Cornely
,
Zoi Dorothea Pana
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.2196/47241
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.2196/47241
Background The VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research. Objective The aim of this study was to approach members of patient advocacy groups (PAGs) across Europe to assess their willingness to register for the VACCELERATE Volunteer Registry and their perspectives related to participating in vaccine trials. Methods In an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry, a standardized survey was developed in English and translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish, and Swedish) by the respective National Coordinator team. The online, anonymous survey was circulated, from March 2022 to May 2022, to PAGs across 10 European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-ended questions evaluating information regarding participants’ perceptions on participating in vaccine trials and their willingness to become involved in the VACCELERATE Volunteer Registry. Results In total, 520 responses were collected and analyzed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are (1) the risks involved, (2) the benefits that will be gained from their potential participation, and (3) the quality and quantity of information provided regarding the trial. The survey revealed that, out of the 520 respondents, 133 individuals across all age groups were “positive” toward registering in the VACCELERATE Volunteer Registry, with an additional 47 individuals reporting being “very positive.” Respondents from Northern European countries were 1.725 (95% CI 1.206-2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry than respondents from Southern European countries. Conclusions Factors discouraging participants from joining vaccine trial registries or clinical trials primarily include concerns of the safety of novel vaccines and a lack of trust in those involved in vaccine development. These outcomes aid in identifying issues and setbacks in present registries, providing the VACCELERATE network with feedback on how to potentially increase participation and enrollment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via PAGs, is the key for increasing patients’ willingness to participate in clinical studies.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.2196/47241
- OA Status
- gold
- Cited By
- 2
- References
- 20
- Related Works
- 10
- OpenAlex ID
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All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4393950262Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.2196/47241Digital Object Identifier
- Title
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Perspectives of European Patient Advocacy Groups on Volunteer Registries and Vaccine Trials: VACCELERATE Survey StudyWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
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2024-04-04Full publication date if available
- Authors
-
Sophia Themistocleous, Christos D. Argyropoulos, Paris Vogazianos, George Shiamakkides, Evgenia Noula, Andria Nearchou, Andreas Yiallouris, Charalampos Filippou, Fiona Stewart, Markela Koniordou, Ioannis Kopsidas, Helena Hervius Askling, Sirkka Vene, Amandine Gagneux‐Brunon, Jana Baranda, Elena Álvarez, Jon Salmanton‐García, Janina Leckler, Alan Macken, Ruth Joanna Davis, Anna Maria Azzini, Charis Armeftis, Margot Hellemans, Romina Di Marzo, Catarina Luís, Ole F. Olesen, Olena Valdenmaiier, Stine Finne Jakobsen, Pontus Nauclér, Odile Launay, Patrick Mallon, Jordi Ochando, Pierre Van Damme, Evelina Tacconelli, Theoklis E. Zaoutis, Oliver A. Cornely, Zoi Dorothea PanaList of authors in order
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https://doi.org/10.2196/47241Publisher landing page
- Open access
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YesWhether a free full text is available
- OA status
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goldOpen access status per OpenAlex
- OA URL
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https://doi.org/10.2196/47241Direct OA link when available
- Concepts
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Family medicine, Clinical trial, German, European union, Inclusion (mineral), Medicine, Equity (law), Psychology, Political science, Geography, Business, Social psychology, Economic policy, Pathology, Law, ArchaeologyTop concepts (fields/topics) attached by OpenAlex
- Cited by
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2Total citation count in OpenAlex
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2025: 2Per-year citation counts (last 5 years)
- References (count)
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20Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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| referenced_works | https://openalex.org/W4281947035, https://openalex.org/W4323339294, https://openalex.org/W4377047655, https://openalex.org/W3122308642, https://openalex.org/W2395252443, https://openalex.org/W4389135170, https://openalex.org/W2525999137, https://openalex.org/W2775049903, https://openalex.org/W2900045472, https://openalex.org/W2974694595, https://openalex.org/W3087533521, https://openalex.org/W3112209665, https://openalex.org/W3164751138, https://openalex.org/W3137768732, https://openalex.org/W1594883903, https://openalex.org/W4293572593, https://openalex.org/W3037933860, https://openalex.org/W2060143658, https://openalex.org/W2737502107, https://openalex.org/W2230795721 |
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