FAQs

About the Brain Health Registry

• What is the Brain Health Registry (BHR)?
• What is your connection to University of California San Francisco (UCSF)?
• Who can join the Brain Health Registry?
• How do I join?
• Why do I have to agree to a consent form?
• Can I get a copy of the consent form I signed?

What to Expect as a Participant

• What is expected of me?
• How much time does it take to participate?
• Is there a cost or will I be paid to join the Brain Health Registry?
• By joining the Brain Health Registry, will I receive healthcare services?
• When does the study end?
• How often should I expect to receive emails from the Brain Health Registry?

Participating in the Brain Health Registry

• I am unable to complete study tasks because I do not have access to a computer or I am too busy right now. Will this affect my participation in the Brain Health Registry?
• I cannot complete certain study tasks because of a disability. Can I continue to participate in the Brain Health Registry?
• I don’t know how to use computers and/or I struggle with technology. Can I have someone assist me in completing study tasks in the Brain Health Registry?
• Will I get results from my brain tests?
• I’m trying to fill out a questionnaire but I don’t see an answer option that perfectly represents me. What do I do?

Participation in Additional Research

• Why haven’t I received any information about participating in additional research?
• I’m interested in participating in additional research studies. How do I learn about these?

My Study Partner

• What is a study partner?
• What if I don’t have a study partner?
• I'm concerned that my care recipient/study partner is a danger to him/herself or others. What should I do?

Withdrawing Participation

• What if I no longer want to participate in the Brain Health Registry?

Your Information and Privacy

• What is my information used for?
• Will the information I give and my cognitive test results be shared with others?
• What is your privacy policy?
• What if my contact information has changed?

Brain Tests

• Will I get results from my brain tests?
• I'm unable to begin the Card Test. What now?
• I’m unable to begin the Pattern Location Test. What now?
• I am worried that I didn’t do my best on a brain test. Can I take the test again?

BHR GenePool Study

• How can I join the GenePool Study?
• What is the purpose of this study?
• What is expected of me as a participant?
• How much time does it take to participate?
• How can I withdraw from this study or what if I no longer want to be part of this study?
• What are the risks of joining this study?

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Electronic Validation (eVAL) Study

• What is the purpose of this study?
• What is expected of me as a participant?
• How much time does it take to participate?
• Where will study visits be located?
• How can I withdraw from this study or what if I no longer what to be part of this study?
• What are the risks of joining this study?

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Technical Issues and Support

• My partner and I share an email address. Can we both use this email address to join the Brain Health Registry?
• I am having trouble logging into the Brain Health Registry. What should I do?
• Which study tasks can I complete using my smartphone or tablet?
• I keep receiving reminder emails to complete study tasks. How do I know which study tasks still need to be completed?
• I made a mistake in answering a question and cannot go back to fix it. Can I change my answer?
• What if I have additional questions or concerns?