Dutch Brain Research Registry for study participant recruitment: Design and first results
Abstract 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 subsequent...
| Main Authors: | , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-01-01
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| Series: | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/trc2.12132 |
| _version_ | 1828199477218902016 |
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| author | Marissa D. Zwan Wiesje M. van derFlier Solange Cleutjens Tamara C Schouten Lisa Vermunt Roos J. Jutten Ingrid S. vanMaurik Sietske A.M. Sikkes Derek Flenniken Taylor Howell Michael W. Weiner Philip Scheltens Niels D. Prins |
| author_facet | Marissa D. Zwan Wiesje M. van derFlier Solange Cleutjens Tamara C Schouten Lisa Vermunt Roos J. Jutten Ingrid S. vanMaurik Sietske A.M. Sikkes Derek Flenniken Taylor Howell Michael W. Weiner Philip Scheltens Niels D. Prins |
| author_sort | Marissa D. Zwan |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-04-12T10:55:44Z |
| format | Article |
| id | doaj.art-9e6dab2e6a054239a3d2d26ce74e60c2 |
| institution | Directory Open Access Journal |
| issn | 2352-8737 |
| language | English |
| last_indexed | 2024-04-12T10:55:44Z |
| publishDate | 2021-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| spelling | doaj.art-9e6dab2e6a054239a3d2d26ce74e60c22022-12-22T03:36:06ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372021-01-0171n/an/a10.1002/trc2.12132Dutch Brain Research Registry for study participant recruitment: Design and first resultsMarissa D. Zwan0Wiesje M. van derFlier1Solange Cleutjens2Tamara C Schouten3Lisa Vermunt4Roos J. Jutten5Ingrid S. vanMaurik6Sietske A.M. Sikkes7Derek Flenniken8Taylor Howell9Michael W. Weiner10Philip Scheltens11Niels D. Prins12Department of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsCenter for Imaging of Neurodegenerative Diseases (CIND) San Francisco Veterans Affair Medical Center San Francisco California USACenter for Imaging of Neurodegenerative Diseases (CIND) San Francisco Veterans Affair Medical Center San Francisco California USACenter for Imaging of Neurodegenerative Diseases (CIND) San Francisco Veterans Affair Medical Center San Francisco California USADepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsDepartment of Neurology Alzheimer Center Amsterdam Amsterdam Neuroscience Amsterdam University Medical Center Amsterdam the NetherlandsAbstract 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.https://doi.org/10.1002/trc2.12132Alzheimer's diseaseclinical trialsdementiapreclinical Alzheimer's diseasepre‐screeningrecruitment |
| spellingShingle | Marissa D. Zwan Wiesje M. van derFlier Solange Cleutjens Tamara C Schouten Lisa Vermunt Roos J. Jutten Ingrid S. vanMaurik Sietske A.M. Sikkes Derek Flenniken Taylor Howell Michael W. Weiner Philip Scheltens Niels D. Prins Dutch Brain Research Registry for study participant recruitment: Design and first results Alzheimer’s & Dementia: Translational Research & Clinical Interventions Alzheimer's disease clinical trials dementia preclinical Alzheimer's disease pre‐screening recruitment |
| 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 | Alzheimer's disease clinical trials dementia preclinical Alzheimer's disease pre‐screening recruitment |
| url | https://doi.org/10.1002/trc2.12132 |
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