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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.

Background Interest in Apolipoprotein E (ApoE) genetic testing for Alzheimer’s disease dementia (AD) is increasing. Even though ApoE-status is more often being disclosed to cognitively normal adults in clinical trials and services like 23andMe are growing, disclosure in the context of individualized risk profiling is not yet common practice. Our objective was to examine attitudes towards genetic susceptibility testing for AD in a sample of Dutch cognitively normal adults. Method An online survey was completed by 428 cognitively normal respondents (response rate 29 between the age of 50 and 75 years from the Dutch Brain Research Registry (Hersenonderzoek.nl). The survey assessed interest in participating in research studies about genetic testing and disclosure, perceptions of its reasons and possible impact and degree of control respondents want in deciding to test their genetic risk (Control Preferences Scale). Furthermore, we randomly presented three fictional scenarios to assess interest in genetic risk disclosure for different risks of AD (10, 30 and 50. Result The majority of respondents was interested in genetic risk disclosure (80 and preferred to decide themselves whether to receive their genetic risk (73 rather than leaving this decision to a health care professional. The most commonly endorsed reason for testing was contributing to scientific research (94. When presented with specific scenarios, most respondents were still interested in their genetic risk, regardless of the presented risk (73-79. The three most important consequences indicated were: 1) sharing their genetic risk with their close environment (77-89, 2) participating in a medication trial (79-87 and 3) making long-term arrangements, e.g. for retirement and health care (69-82. More than half of the respondents (50-67 would probably adjust their lifestyle, e.g. exercise more or eat healthier. Conclusion Our findings indicate that the majority of respondents wants to be informed about their genetic risk for AD and wants to make this decision themselves. The main reason for interest in testing is contributing to scientific research. Future studies should examine the best way to disclose genetic risk for AD by informing participants carefully and closely looking at the possible impact, especially in the context of future individualized risk profiling.