Frequently Asked Questions
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You have questions? We have answers!  The following is a list of frequently asked questions grouped by category. If your concern is not addressed here and you still require support, please let us know by sending an email to: info@brainhealthregistry.org

Before joining the Brain Health Registry

What is the purpose of the Brain Health Registry?

The purpose of the Brain Health Registry is to promote healthy brain function through the prevention of brain diseases, brain disorders and brain injuries that affect brain function in adults. This is the first neuroscience project to leverage online possibilities in this way and on this large scale.

What is your connection to University of California San Francisco (UCSF)?

We are a research study that is overseen by UCSF. This means that everything that the Brain Health Registry does is reviewed and approved by the UCSF Institutional Review Board (IRB) or ethics board.

Who can join the Brain Health Registry?

Anyone 18 years and older can join the Registry. To date, nearly 50,000 people have already joined the Brain Health Registry, and we are working to hit our target of 100,000 Registrants. We welcome people of all ages, from all walks of life.

The more people who join the Brain Health Registry and agree to answer questions and take tests, the more effectively we will be able to facilitate recruitment and screening for clinical trials. This, in turn, will help accelerate the development of treatments for brain disease such as Alzheimer’s, Parkinson’s, and more.

What do I have to do to join?

Joining the Brain Health Registry is easy and takes a few minutes. From there the participation process involves answering some questions and taking online brain tests. The tests are like games – but without scores.

It takes most people less than three hours per year to participate. And you do not need to do this all at one time – you can stop and restart when it is convenient for you.

To participate, you will also be required to agree to a consent form.

Why do I have to agree to a consent form?

As part of registering for the study, you will be taken to the consent page. This is a research study, and the UCSF Institution Review Board (also known as an IRB or Ethics board) approves and regulates all research studies at UCSF. The consent form outlines the study in detail and lets you know your role and what your rights are as a participant in the study.

What to expect as a participant

What is expected of me?

Once you give your consent, you will complete some questionnaires. You’ll be asked to give some basic information (date of birth, ethnicity, marital status, etc.) as well as how to contact you. You will be asked to complete questionnaires about your health, lifestyle and medical history. You do not have to answer all the questions. The Brain Health Registry also includes computerized tests of your memory, attention, and how quickly you process new information and organization.

We will track this information over time. Our hope is that members return to the Brain Health Registry every 3 to 6 months. This will help us better understand human brains as they age and change over time.

You may also be asked to agree to have your medical records included in the Registry or to provide a sample of your saliva for genetic testing. These are optional and voluntary.

What happens after I join the Brain Health Registry?

Our hope is that members return to the website every 3 to 6 months. This will help us better understand human brains as they age and change over time.

Your information will be saved and used to identify potential volunteers for future research studies related to brain health. You will only be contacted for studies that have already been reviewed and approved by an Institutional Review Board (IRB). Please keep in mind that the choice to participate or not will always be yours. 

How much time does it take to participate?

Most of the questionnaires take less than 5 minutes each to complete. The longest takes about 15 minutes. You do not need to complete all the questionnaires and brain tests at one time – you can leave the website and return when it is convenient for you.

Altogether, it takes approximately one and half hours from start to finish, whether in a single session or over the course of several visits.

Our hope is that members return to the Brain Health Registry every 3 to 6 months to complete more questionnaires and brain tests. You can expect follow up visits to take about the same or a little less time than your first visit.

Is there a cost or payment when joining the Brain Health Registry?

There is no cost to join. You will not be paid to join or participate. The Brain Health Registry is relying on volunteers to participate in this project.

By joining the Brain Health Registry, will I receive healthcare services?

No. Participation in the Brain Health Registry does not offer direct access to any medical services or advice, nor does it endorse or provide any medical or healthcare product. If you have any questions about your healthcare, please talk to your doctor.

When does the study end?

There is currently no end date to the study. As long as you are willing to participate, we will collect data.

How often should I expect to receive email from the Brain Health Registry?

Email is the primary way we communicate with our members. After joining the registry, you will automatically receive two emails - one thanking you for your participation and another asking you to confirm your email address. We ask you to confirm your email address for extra security measures.

Additionally, we send periodic reminder emails asking you to come back to the Registry to complete unfinished tasks. You will also receive an email from us when it is time for you to return for a follow-up visit.

What is a study partner?

Our Study Partner initiative now allows you to identify and invite a study partner to join the Brain Health Registry’s Study Partner Portal. This is an innovative new feature that enables you and your study partner to work as a team to advance brain health research.

A study partner is someone who knows you well enough to answer questions about your brain health and ability to perform day-to-day activities. He/she could be a friend, family member or spouse. He/she does not have to live with you.

Study partners log into the Brain Health Registry website to answer questions about you and some questions about themselves. They may also be asked to complete online brain tests. If your study partner is a caregiver to you, he/she will also answer questions about his/her experience as a caregiver.

Having the pair of you participate in the Brain Health Registry together can help us gain a more complete understanding of brain health, including information about your day-to-day functioning and quality of life. To learn more about the Study Partner Portal, please click here.

 
What if I don’t have a study partner?

If you choose not to invite a study partner, your participation in the Brain Health Registry will not be affected. You can let us know that you do not wish to invite a study partner simply by starting the Study Partner questionnaire and indicating this preference in the survey. 

If you would like to check with your study partner first before giving us his/her information, you can wait to complete the “My study partner” task until you’ve confirmed that your study partner wants to participate.  Or, if you’ve already started the task, you can click “I don’t want to do this task now”, then come back and finish the task after you’ve confirmed that your study partner wants to participate.  If you previously indicated that you do not have a study partner, but now you do, you will have a chance to update this information at your next follow up visit.

I'm concerned that my care recipient/study partner is a danger to him/herself or others. What should I do?

If you feel that your care recipient/study partner is experiencing a medical or psychiatric emergency, please contact 911. In addition, we would like to provide the following resources to you, which may be helpful:

National Suicide Prevention Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.
https://suicidepreventionlifeline.org/
1-800-273-8255

National Alliance on Mental Illness is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
http://www.nami.org/
1-800-950-6264

Alzheimer’s Association Helpline provides reliable information and support to all those who need assistance.   The 24/7 Helpline serves people with memory loss, caregivers, health care professionals and the public.
1-800-272-3900

NIH Alzheimer’s Disease Education and Referral Center compiles, archives, and disseminates information concerning Alzheimer's disease for health professionals, people with AD and their families, and the public.
https://www.nia.nih.gov/alzheimers
1-800-438-4380

Your privacy and information

What is my information used for?

We will use your information for research. We collect information about your identity, your health, your behavior, and your cognitive function. This information will be used in research analyses and results of these analyses may be presented in scientific conferences and published. In the event this occurs, the presentations and publications will never include any information that could identify you in any way.

Based on the needs of the scientific and medical communities, we may use your information to identify potential participants for clinical trials to test diagnostic tools and potential therapies for brain disorders. Brain Health Registry participants will only be contacted about participating in clinical trials that have already been reviewed and approved by Institutional Review Board (also known as ethics boards). Once given the opportunity to participate in such a clinical trial, the choice to participate or not will always be yours.

Participation in the Brain Health Registry involves completing some research assessments through commercial providers and some of the research procedures require involvement via an internet connection. Due to this, there may be increased confidentiality risks associated with study participation. However, no personally identifiable information will be provided to our commercial providers and we take every step possible to ensure the information you provide to the Brain health Registry is kept safe and secure.

Will the information I give and my cognitive test results be shared with others?

The personal information you provide to the Brain Health Registry is only used for the purposes stated in our consent form and privacy statement. Information about Registry participants may be shared with our collaborators, but that data is de-identified (meaning the data we provide cannot be traced back to you).

Will I get my results?

At this time, we are not providing results to individuals participants but are exploring this as a future option.

What is your privacy policy?

To learn more about our privacy policy, please visit our privacy policy page.

What if my contact information has changed or I no longer want to be part of the Registry?

You may change your contact information or withdraw consent at any time. To change your contact information login to the Brain Health Registry, go to your profile page by selecting "My Profile" in the upper right part of your screen, and enter your updated contact information.

To withdraw from the Registry, login to the Brain Health Registry and go to your profile page. Once in your profile, simply click the button “Withdraw Consent”. Please know that you can rejoin the Brain Health Registry at any time after you have withdrawn from the study – all you need to do is login to the Brain Health Registry website with your credentials and resign our consent form. You may also email us at info@brainhealthregistry.org  to request withdrawal.

Technical issues and support

My partner and I have a joint email account. Can we both use this email to join the Brain Health Registry?

Yes. In this case we ask that you enter unique user names when registering, as this is how we will distinguish between accounts.

I’m trying to fill out the questionnaires but I don’t see the answer option that perfectly represents me. What do I do?

We understand that you might not see an answer choice that exactly matches your situation. Please do your best to select an answer option that best describes your situation. It may be helpful to know that the questions and possible answers come from standard, validated scientific assessments – which is why we choose not to alter the question and/or answer options.

Which study tasks can I complete using my Smartphone or tablet?

Currently, the Brief Memory Test and all the questionnaires are accessible using a Smartphone or tablet.

The NeuroCognitive Performance Test and the Card Test both require Adobe Flash Player, and are therefore not compatible with mobile devices. If you are trying to take these tests from a tablet or Smartphone, the tests will not work.

If possible, please return to the Brain Health Registry from a desktop or laptop computer, as they are more likely to have Adobe Flash Player. If this not possible, not to worry. You do not have to complete all study tasks to remain enrolled in the Registry.

I’m trying to do the NeuroCognitive Performance Test but it will not open. What’s wrong?

Presently this brain test requires Adobe Flash Player. If you are using a laptop or desktop computer and are unable to open this test, you may need to install the latest version of Adobe Flash Player and update your browser settings to enable this program to work. For instructions on how to install Adobe Flash Player and change your browser settings, please click here.

If you are trying to take this test from a tablet or Smartphone, the test will not work. Our website is not currently optimized for use with mobile devices. We are working on making our site more mobile-friendly. In the meantime, if possible, please return to the Brain Health Registry from a desktop or laptop computer.

 I'm unable to begin the Card Test. What’s wrong?

Google Chrome has built-in Flash Player, called "Pepper Flash," that is not compatible with Cogstate's Card Test. We recommend logging into the Brain Health Registry from another Internet browser, such as Firefox, Safari or Internet Explorer.

The Card Test currently requires Adobe Flash Player. If you are using a laptop or desktop computer and are unable to open this test, you may need to install the latest version of Adobe Flash Player and update your browser settings to enable this program to work. For instructions on how to download Adobe Flash Player and change your browser settings, please click here.

If you are trying to take this test from a tablet or Smartphone, the test will not work. Our website is not currently optimized for use with mobile devices. We are working on making our site more mobile-friendly. In the meantime, if possible, please return to the Brain Health Registry from a desktop or laptop computer.

What if I have additional questions or concerns?

If you have questions or concerns about your taking part in the Brain Health Registry, please email us at info@brainhealthregistry.org.