Website Privacy Policy
LATE takes your privacy seriously. We want you to know how we collect, use, share, and protect your information. For details about patient confidentiality, view our Patient Privacy Policy ›
Your LATE information will be used only by qualified researchers who have permission from the registry operators and the UCI Institutional Review Board. We will never share your information with insurers, pharmaceutical companies, or other entities outside of UCI without consent.
Registry data collection operates through the Research Electronic Data Capture (REDCap, Project REDCap) platform. This system provides functionality and enables the LATE operators to rapidly adjust registry elements as needed.
What we collect
We respect the right to privacy of all visitors to the LATE website. We do not collect information that would personally identify you unless you choose to provide it.
There are two types of information we collect on this website:
- Personally identifiable information
In some instances, LATE collects personally identifiable information (such as email address, name, phone number, etc.) through this website. This information is only collected when volunteered by the user – for example, when completing a form to register for a class or subscribe to a newsletter. If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.
- Non-personally identifiable information
This site also collects non-personally identifiable user information, such as Internet Protocol (IP) addresses, cookies, Internet tags and navigational data. This information is used for system management and to improve the content and navigation of the site.
We do not match personally identifiable information with non-personally identifiable information. In other words, we do not link personal information (for example, your name and location) with visit information, such as pages visited or files downloaded. In effect, all such visit information is anonymous.
Personal information you submit, such as your email address, is shared only with LATE organization personnel who need this information to respond to your question or request. We do not save personal information to use for other purposes, and we do not provide it to any other organizations.
Google Analytics
This site may collect data that is non-personally identifiable using first- and third-party cookies for demographics and other behavioral information as a part of an advertising or remarketing program. Users may opt out of Google Analytics for Display Advertising through their browser settings or by adding an Opt-Out Browser Add-On ›
Sharing of collected information
Who we share your data with, Where we send your data, Your contact information
LATE does not share, without your consent, personally identifiable information, except for certain explicit circumstances in which disclosure may be required by law. Nor will LATE sell your personally identifiable information to third-party organizations.
Please click to learn about Mailchimp’s Cookie Policy, Privacy Policy, and Terms. Please click to learn more about Automattic Terms and Conditions. Please click to learn more about Eventbrite Privacy Policy. Please click to learn more about UC Irvine’s Privacy Policy. Individuals who consent to be added to the mailing list will have their name and mailing information shared securely with an external mailhouse for print and mailing purposes.
Visitor comments may be checked through an automated spam detection service.
Protecting your privacy
When you visit the LATE website, we use industry standard security measures to protect the confidentiality of personal information under our control and appropriately limit access to it.
We use a variety of information security measures to protect your online transactions with us. LATE uses encryption technology, Secure Sockets Layer (SSL), to protect your personal information during data transport.
SSL protects information you submit via our website, such as your name and email address and all registry data you may choose to provide.
We will never ask for credit card or other account numbers. We use regular malware scanning on our systems.
Your personal information is contained behind secured networks and is only accessible by a limited number of persons who have special access rights to such systems and are required to keep the information confidential. In addition, all sensitive information you supply is encrypted.
We implement a variety of security measures when a user enters, submits, or accesses their information to maintain the safety of your personal information.
LATE cannot ensure or guarantee the security of any information you transmit to us, and you do so at your own risk. We take reasonable steps to ensure the integrity and confidentiality of personally identifiable information that you may provide.
Electronic transmissions via the Internet are not necessarily protected from interception, so we cannot absolutely guarantee the security or confidentiality of such transmissions.
Email communication, newsletters and related services
Communication you send to us via email links on our site may be shared with a customer service representative, a medical expert or staff member who can best address your inquiry. We make every effort to respond in a timely fashion once communications are received.
Email does not provide a completely secure and confidential means of communication. Please do not send any personal health information via email. Email traffic flows through many different servers, while registry surveys entries are handled by our REDCap system. The health information that you submit on our REDCap form submission is direct.
Embedded content from other websites
LATE websites link to other websites, many of which have their own privacy policies. Be sure to review the privacy policy on the site you’re visiting.
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracing your interaction with the embedded content if you have an account and are logged in to that website.
How long we retain your data
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
We collect information about visitors who comment on Sites that use our Akismet anti-spam service. The information we collect depends on how the User sets up Akismet for the Site, but typically includes the commenter’s IP address, user agent, referrer, and Site URL (along with other information directly provided by the commenter such as their name, username, email address, and the comment itself).
What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Privacy policy updates
We may need to update our privacy policy as technology changes and LATE evolves. If we make significant changes to the privacy policy, a prominent message will be posted on our websites.
Acceptance of these terms
By using this site, you signify your acceptance of the privacy policy. If you do not agree to this policy, please do not enroll in the LATE Registry.
If you have any questions or concerns, please email privacy@mind.uci.edu.