It's easy to register! You sign up with your name, email (a simple way for us to contact you), password, and birth date. You'll get a confirmation email to verify your email, sign off on an electronic consent and pledge page, and start taking surveys from the homepage.

Once you register, you'll be taken to the consent page. This is a research study, and the UCSF Committee on Human Research (also known as an IRB or Ethics Board) approves and regulates all research studies conducted at UCSF. These consent forms outline the study and exactly what your role will be.

For the main part of the eGene Study, you’ll be asked to complete an eVisit—several sections of easy-to-complete surveys—once per year. You’ll also receive special invitations periodically to participate in other activities or events hosted by the UCSF Center for BRCA Research.

Ideally, we want you to 1) answer the study's health-related questions, 2) link us to your FitBit if you have one, 3) check in annually so we have your most up-to-date information – we will send an email to prompt you, and 4) participate for at least 10 years so we can track how your health changes over time.

You can do each survey module online or on your smartphone at your leisure. Most of them are very basic, but a few require some additional effort. For example, you might have to gather medical history information from family members. Some of them may ask for sensitive information such as next of kin or detailed contact information. All of them will help us learn how to prevent and treat cancer.

You will have an eVisit annually when we’ll ask you to complete a survey. The first one will be the longest in order to collect all the baseline information. You can do the survey all at once in one eVisit or spread it out over time. And, we’ll remind you when they are due and when you have new ones to complete. Once you finish a survey, you’ll be able to see it on your homepage. As the years go by, you’ll be able to see your progress along the way with each year’s survey on your homepage.

Absolutely. We take this VERY seriously, and will do everything we can to protect your information and keep it private and secure. Please read the Eureka Privacy Policy.

Absolutely not. We will never sell, rent, or lease your information, and we will never voluntarily share your information without your permission.

We will use your information for research. We collect information about your identity, your health, and your behavior in the eGene Study. This information will be used in research analyses and results of these analyses will be presented in scientific conferences and published. These presentations and publications will never show any information that could identify you.

Protection Against Involuntary Disclosure of Your Information: To help us protect your privacy, we have been granted a Certificate of Confidentiality from the United States National Institute of Health (NIH). This certificate protects against compulsory legal demands, such as court orders and subpoenas, for identifying information or identifying characteristics of a research participant. The eGene Study staff can't be forced to disclose study information that identifies you, even if ordered by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. The researchers will use the certificate to resist any demands for information that would identify you, except to prevent serious harm to yourself or others. We will, in all cases, take the necessary action, including reporting to authorities, to prevent serious harm to yourself or others. Please also read the Eureka Privacy Policy.

Electronic Security and Adherence to the HIPAA Privacy Rule: The eGene Study follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All study data is transmitted, stored, and processed in a secure environment.

It can take many years to analyze collected data and understand it. It will take even more time to develop new treatments and prevention methods. By launching a study of the size and scope of the eGene Study, we hope to accelerate our understanding of cancer risk, onset and progression, treatment response, and outcomes. We are committed to keeping you informed of milestones as new research emerges and is translated into patient care strategies.

Once you've signed up for the study, you'll be assigned a personal research coordinator who you'll be able to contact by email or phone with any questions. They'll also email you important reminders and news about the study, if you wish. If you have questions about the study before you sign up, or if you have difficulty signing up, please email us at BRCACenterResearch@ucsf.edu.