TY - JOUR
T1 - Dutch Brain Research Registry for study participant recruitment: Design and first results
T2 - Design and first results
AU - Zwan, Marissa D
AU - van der Flier, Wiesje M
AU - Cleutjens, Solange
AU - Schouten, Tamara C
AU - Vermunt, Lisa
AU - Jutten, Roos J
AU - van Maurik, Ingrid S
AU - Sikkes, Sietske A M
AU - Flenniken, Derek
AU - Howell, Taylor
AU - Weiner, Michael W
AU - Scheltens, Philip
AU - Prins, Niels D
N1 - Funding Information: Dr. Weiner receives support for his work from the following funding sources: NIH: 5U19AG024904‐14; 1R01AG053798‐01A1; R01 MH098062; U24 AG057437‐01; 1U2CA060426‐01; 1R01AG058676‐01A1; and 1RF1AG059009‐01, DOD: W81XWH‐15‐2‐0070; 0W81XWH‐12‐2‐0012; W81XWH‐14‐1‐0462; W81XWH‐13‐1‐0259, PCORI: PPRN‐1501‐26817, California Dept. of Public Health: 16‐10054, U. Michigan: 18‐PAF01312, Siemens: 444951‐54249, Biogen: 174552, Hillblom Foundation: 2015‐A‐011‐NET, Alzheimer’s Association: BHR‐16‐459161; The State of California: 18‐109929. He also receives support from Johnson & Johnson, Kevin and Connie Shanahan, GE, VUmc, Australian Catholic University (HBI‐BHR), The Stroke Foundation, Fidelity Charitable, and the Veterans Administration. Dr. Weiner is a full time Professor for the University of California San Francisco (UCSF), and Principal Investigator of many projects with the above grant funding. Dr. Weiner has served on Advisory Boards for Cerecin/Accera, Alzheon, Inc., Nestle/Nestec, PCORI/PPRN, Dolby Family Ventures, National Institute on Aging (NIA), Boston University Alzheimer’s Disease and CTE Center, MIRIADE at VUmc for Amsterdam UMC, Cytox, Indiana University, Acumen, Brain Health Registry and ADNI. He serves on the Editorial Boards for Alzheimer’s & Dementia, TMRI and MRI. He has provided consulting and/or acted as a speaker/lecturer to Cerecin/Accera, Inc., Alzheimer’s Drug Discovery Foundation (ADDF), BioClinica, The Buck Institute for Research on Aging, FUJIFILM‐Toyama Chemical (Japan), Garfield Weston, Baird Equity Capital, University of Southern California (USC), T3D Therapeutics, Cytox, and Japanese Organization for Medical Device Development, Inc. (JOMDD). He holds stock options with Alzheon, Inc., Alzeca, and Anven. D. Prins is consultant to Boehringer Ingelheim and Aribio. He is co‐PI of a study with Fuji Film Toyama Chemical. He serves on the DSMB of Abbvie’s M15‐566 trial. He is CEO and co‐owner of the Brain Research Center, The Netherlands. All other authors report no financial disclosures or conflicts of interest. Funding Information: Hersenonderzoek.nl is supported by ZonMw-Memorabel (project no 73305095003; a project in the context of the Dutch Deltaplan Dementie), Gieskes-Strijbis Foundation, Alzheimer Nederland (Dutch Alzheimer's Society), and Hersenstichting (Dutch Brain Foundation). Funding Information: Hersenonderzoek.nl is supported by ZonMw‐Memorabel (project no 73305095003; a project in the context of the Dutch Deltaplan Dementie), Gieskes‐Strijbis Foundation, Alzheimer Nederland (Dutch Alzheimer's Society), and Hersenstichting (Dutch Brain Foundation). Publisher Copyright: © 2021 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
PY - 2021
Y1 - 2021
N2 - 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.
AB - 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.
KW - Alzheimer's disease
KW - clinical trials
KW - dementia
KW - pre-screening
KW - preclinical Alzheimer's disease
KW - recruitment
KW - register
KW - registry
KW - secondary prevention trials
UR - http://www.scopus.com/inward/record.url?scp=85108118383&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/trc2.12132
DO - https://doi.org/10.1002/trc2.12132
M3 - Article
C2 - 33614897
SN - 2352-8737
VL - 7
SP - e12132
JO - Alzheimer's and Dementia: Translational Research and Clinical Interventions
JF - Alzheimer's and Dementia: Translational Research and Clinical Interventions
IS - 1
M1 - e12132
ER -