Kinlist Privacy Policy

Kinlist understands how important the privacy of personal information is to our users. We understand that your privacy matters and we respect your privacy choices. This summary of our privacy policy is intended to give you an overview of:

We urge you to take the time to read our Privacy Policy for complete detail about our privacy practices and your information.

Kinlist is a non-profit website from medical researchers and physicians

Kinlist was created and is operated by researchers and physicians at the University of California San Francisco. It was created to provide a service to relatives who have had a loved one pass from sudden cardiac death, to promote awareness of sudden cardiac death, to provide information to help relatives assess their medical risk, and to collect information for research to better understand the causes of sudden cardiac death and identify predictors.

Information Collected About You

We may use your information for research: We collect information about your identity, your health, and some of your behaviors that might help us better understand heart disease. This information will be used in research analyses and results of these analyses may be presented in scientific conferences and published. These presentations and publications will never show any information that identifies you or any other individual using the site.

We will not share your information: We will never sell, rent, or lease your information, and we will never voluntarily share identifying information about you without your permission.

When you registered for the study, you provided us with a username and a password. You can use this to sign into the site and see some of the health information you've provided to us. You should be very careful not to provide your login information to anyone else, or they could sign in as you and be able to see that same health information. If you are worried that someone else may be using your login information, please let us know immediately, or change your password yourself.

What Choices Do I Have?

If you do not want your Personal Information used by Kinlist as provided in this Privacy Policy, you should not register as a member or for any specific tool or application that collects Personal Information.

How Information Collected About You Is Used

We may use information we collect about you to:

We may combine Personal and Non-Personal Information collected by Kinlist about you, and may combine this information with information from external sources.

How Do We Secure and Retain Your Information?

We have put in place technical, physical, and administrative safeguards to protect the Personal Information that we collect.

Protection Against Involuntary Disclosure of Your Information: We will do everything we can to keep your study information private. To further help us protect your privacy, we have obtained a Certificate of Confidentiality from the United States Department of Health and Human Services (DHHS). Under the terms of the certificate, Kinlist staff cannot be compelled 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. You should understand that we will, in all cases, take the necessary action, including reporting to authorities, to prevent serious harm to yourself or others. Also, please note that a Certificate of Confidentiality does not represent an endorsement of the research study by DHHS or the National Institutes of Health.

Changes to This Privacy Policy

We reserve the right to change or modify this Privacy Policy or any of our tools or services at any time and any changes will be effective upon being posted unless we advise otherwise. If we make any material changes to this policy we will notify you by email (sent to the email address specified when you register) and/or by means of a notice on this website prior to the change becoming effective. We encourage you to periodically review this website for the latest information on our privacy practices. If you do not accept the terms of this Privacy Policy, we ask that you do not register with us and that you do not use the Kinlist Web Sites. Please exit the Kinlist Web Sites immediately if you do not agree to the terms of this Privacy Policy.

Electronic Security and Adherence to the HIPAA Privacy Rule: Kinlist follows the general 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.

While we cannot provide an absolute data security guarantee, your information will be transmitted and stored using state-of-the-art security systems similar to those that protect websites used by banks and electronic health record systems. For any questions, please contact your Study Coordinator.

Contact Kinlist

Please send us an email using the Contact Us link at the bottom of every page of our site if you have any questions about this Privacy Policy or the Personal Information we maintain about you.
You can also contact Kinlist’s Privacy Office at: