It's quite easy to register. You sign up on the site 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 Health eHeart Study, you’ll be asked to complete an eVisit—several sections of easy-to-complete surveys and other study activities—every six months. You’ll also receive special invitations periodically to participate in other parts of the study. (We will only ask for your participation in such a study after you've consented to that specific sub-study.) Some examples: mobile apps to track your activity or heart measures (such as heart rate), sensors to measure things (like ECGs, sleep, blood pressure, weight), an app to integrate with your Facebook to study the impact of social networking on health, collection of DNA, or a visit to one of our study sites (e.g., UCSF) to get specialized cardiovascular testing. You’ll see all your study activities and special invitations on your homepage once you join the study.
Ideally, we want you to 1) answer the study's health-related questions, 2) check in regularly so we have your most up-to-date information, 3) let us know which sub-studies and special invitations you want to accept and participate in, and 4) participate for at least 10 years so we can track how your health changes over time.
You can do each survey online or on your smartphone at your leisure, typically in less than five minutes. 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 or obtain certain measurements (such as a blood pressure check or a test in your doctor's office or local pharmacy). 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 heart disease.
You will have an eVisit about every 6 months when we’ll ask you to complete a series of surveys. The first one will be the longest in order to collect all the baseline information. You can do the surveys in each eVisit all at once or spread them 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, a new one will automatically appear on the homepage until you've completed all of the surveys in that eVisit (and you’ll be able to see your progress along the way). In addition, you’ll receive occasional special invitations to participate in sub-studies or take special surveys, depending on your specific conditions.
Absolutely. We take this VERY seriously, and will do everything we can to protect your information and keep it private and secure. Read the Privacy Policy here.
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 Health eHeart 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 applied for a Certificate of Confidentiality from the United States Department of Health and Human Services (DHHS). This certificate protects against compulsory legal demands, such as court orders and subpoenas, for identifying information or identifying characteristics of a research participant. The Health eHeart 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. Read the Privacy Policy here.
Electronic Security and Adherence to the HIPAA Privacy Rule: The Health eHeart 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.
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 Coordinator@health-eheartstudy.org.
