Privacy Policy

The Brain Health Registry considers the protection of your privacy to be one of our most important responsibilities. The following safeguards have been set up to protect your privacy and the confidentiality of your personal information:

Control of contact information

You can control what information is in your profile. You may change your contact information at any time. Only you can add, change or delete information in your profile. You may also withdraw your consent to be a part of the Brain Health Registry at any time.

Password-protected profile

When registering online, you will be asked to provide an email address and password. This authenticates your identity and ensures that only you can access or update your Brain Health Registry profile.

Electronic security

The Brain Health Registry follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All data are transmitted, stored and processed in a secure environment.

Adherence to the HIPAA Privacy Rule

No one besides the Brain Health Registry staff will have access to your contact and health information. The Brain Health Registry staff will never share your personal health information with any individual or organization without your explicit permission. Your personal health information includes your name, email address, mailing address, telephone number and date of birth.

Protection against involuntary disclosure of your information

The Brain Health Registry staff holds a Certificate of Confidentiality, which is issued by the National Institutes of Health (NIH) to protect the privacy of research participants. Under the terms of the Certificate of Confidentiality, The Brain Health Registry staff cannot be compelled to disclose information that may identify you, even if ordered by a court subpoena, in any federal, state or local civil, criminal, administrative, legislative or other proceedings. The only circumstance in which the Brain Health Registry would disclose your information without your permission would be to prevent injury or death to yourself or others.

Disclosure of your information by you or others

Please note that a Certificate of Confidentiality does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in the Brain Health Registry. If an insurer, employer, or other person obtains your written consent to receive your personal information, then The Brain Health Registry staff may not use the Certificate of Confidentiality to withhold that information. Finally, the Certificate may not be used to withhold information from the federal government needed for auditing or evaluating federally funded projects or information needed by the U.S. Food & Drug Administration (FDA).

Personal Motivations

I’ve seen the impact of Alzheimer’s – I’ve had friends who have lost loved ones, and the toll is immense. So I see it as a privilege to help with medical research. I feel like this is a way I can pay it forward to future generations, including my own children.

Jackie BobergSaratoga, CA

There are many reasons why I'm participating in the Brain Health Registry, but here's the number one reason: my father. Ten years ago, he was diagnosed with Parkinson's disease. I want to help find a cure and participating in this project gives me the greatest opportunity to do just that.

Angela DanielsWindsor, CA

It’s been two years since my mom died while suffering from Alzheimer’s. I think about her every day. Participating in the Brain Health Registry is a way for me to honor her. It’s something I can do that’s real and tangible.

John FitzpatrickSan Bruno, CA

My godfather has Parkinson's. He's a priest, and the disease is taking away his ability to preach. I signed up with him in mind. If, in the long run, this can help save and empower voices like his, it will be a great thing. And I'd like to be a part of it.

Theresa WalshSanta Clara, CA

My college roommate was recently diagnosed with Parkinson's. She's working hard - exercising, meditating, doing yoga - to keep her symptoms at bay, and she's holding on to the positive attitude she's always had. I'm hoping this research can lead to a cure and help her stay positive and vital. That’s why I’m here.

Anne de la RosaSan Mateo, CA

PTSD doesn't have to break apart families or end lives, but it often does. Veterans like my dad who go into a war zone and come out with a devastating disorder deserve new and better treatments to help them live normal, happy and fulfilling lives. I am honored to take part in the Brain Health Registry so I might help those who have put themselves at risk in service to the nation.

Roxanna SmithOakland, CA

It’s easy to join!

(You must be 18 years or older)

1. Sign Up

You can join as an individual or with a partner.

2. Tell Us About Yourself

Answer some questions about your medical history, current health, and lifestyle.

3. Do Some Online Brain Tests

These tests exercise your memory, and are like games.