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Dutch Brain Research Registry for study participant recruitment: Design and first results

INTRODUCTION: The Dutch Brain Research Registry aims to facilitate online recruitment of participants for brain disease studies. METHODS: Registrants were primarily recruited through an online social media campaign. The registration process included a short questionnaire, which was subsequently used...

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Autores principales: Zwan, Marissa D., van der Flier, Wiesje M., Cleutjens, Solange, Schouten, Tamara C, Vermunt, Lisa, Jutten, Roos J., van Maurik, Ingrid S., Sikkes, Sietske A.M., Flenniken, Derek, Howell, Taylor, Weiner, Michael W., Scheltens, Philip, Prins, Niels D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7882519/
https://www.ncbi.nlm.nih.gov/pubmed/33614897
http://dx.doi.org/10.1002/trc2.12132
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author Zwan, Marissa D.
van der Flier, Wiesje M.
Cleutjens, Solange
Schouten, Tamara C
Vermunt, Lisa
Jutten, Roos J.
van Maurik, Ingrid S.
Sikkes, Sietske A.M.
Flenniken, Derek
Howell, Taylor
Weiner, Michael W.
Scheltens, Philip
Prins, Niels D.
author_facet Zwan, Marissa D.
van der Flier, Wiesje M.
Cleutjens, Solange
Schouten, Tamara C
Vermunt, Lisa
Jutten, Roos J.
van Maurik, Ingrid S.
Sikkes, Sietske A.M.
Flenniken, Derek
Howell, Taylor
Weiner, Michael W.
Scheltens, Philip
Prins, Niels D.
author_sort Zwan, Marissa D.
collection PubMed
description INTRODUCTION: The Dutch Brain Research Registry aims to facilitate online recruitment of participants for brain disease studies. METHODS: Registrants were primarily recruited through an online social media campaign. The registration process included a short questionnaire, which was subsequently used in the prescreening process to match participants to studies. RESULTS: In the first 18 months, 17,218 registrants signed up (58±11 years old, 78% female). Out of 34,696 study invitations that were sent, 36% were accepted by registrants, of which 50% to 84% were finally enrolled, resulting in 10,661 participants in 28 studies. Compared to non‐participants, study participants were more often older, male, more highly educated, retired or unemployed, non‐smoking, healthier, and more often had a family member with dementia. DISCUSSION: The Dutch Brain Research Registry facilitates effective matching of participants to brain disease studies. Participant factors related to study enrollment may reflect facilitators or barriers for participation, which is useful for improving recruitment strategies.
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spelling pubmed-78825192021-02-19 Dutch Brain Research Registry for study participant recruitment: Design and first results Zwan, Marissa D. van der Flier, Wiesje M. Cleutjens, Solange Schouten, Tamara C Vermunt, Lisa Jutten, Roos J. van Maurik, Ingrid S. Sikkes, Sietske A.M. Flenniken, Derek Howell, Taylor Weiner, Michael W. Scheltens, Philip Prins, Niels D. Alzheimers Dement (N Y) Research Articles INTRODUCTION: The Dutch Brain Research Registry aims to facilitate online recruitment of participants for brain disease studies. METHODS: Registrants were primarily recruited through an online social media campaign. The registration process included a short questionnaire, which was subsequently used in the prescreening process to match participants to studies. RESULTS: In the first 18 months, 17,218 registrants signed up (58±11 years old, 78% female). Out of 34,696 study invitations that were sent, 36% were accepted by registrants, of which 50% to 84% were finally enrolled, resulting in 10,661 participants in 28 studies. Compared to non‐participants, study participants were more often older, male, more highly educated, retired or unemployed, non‐smoking, healthier, and more often had a family member with dementia. DISCUSSION: The Dutch Brain Research Registry facilitates effective matching of participants to brain disease studies. Participant factors related to study enrollment may reflect facilitators or barriers for participation, which is useful for improving recruitment strategies. John Wiley and Sons Inc. 2021-02-14 /pmc/articles/PMC7882519/ /pubmed/33614897 http://dx.doi.org/10.1002/trc2.12132 Text en © 2021 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Research Articles
Zwan, Marissa D.
van der Flier, Wiesje M.
Cleutjens, Solange
Schouten, Tamara C
Vermunt, Lisa
Jutten, Roos J.
van Maurik, Ingrid S.
Sikkes, Sietske A.M.
Flenniken, Derek
Howell, Taylor
Weiner, Michael W.
Scheltens, Philip
Prins, Niels D.
Dutch Brain Research Registry for study participant recruitment: Design and first results
title Dutch Brain Research Registry for study participant recruitment: Design and first results
title_full Dutch Brain Research Registry for study participant recruitment: Design and first results
title_fullStr Dutch Brain Research Registry for study participant recruitment: Design and first results
title_full_unstemmed Dutch Brain Research Registry for study participant recruitment: Design and first results
title_short Dutch Brain Research Registry for study participant recruitment: Design and first results
title_sort dutch brain research registry for study participant recruitment: design and first results
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7882519/
https://www.ncbi.nlm.nih.gov/pubmed/33614897
http://dx.doi.org/10.1002/trc2.12132
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