The SADS Foundation is committed to protecting the privacy of our families. To better protect your privacy, we provide this notice explaining our information practices. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and content of your correspondence with us.
When you contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it or use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within SADS Foundation or our professional advisors for a response. A copy of your correspondence may be retained at the SADS Foundation home office and also by the responding individual.
SADS Foundation has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in SADS conditions. SADS Foundation will never release our mailing list or the names of our member families to any outside organization or third party. However, if an outside organization sends us information for distribution to SADS Foundation families, we may mail it to you after the Board approves the mailing.
Information determined to be confidential can only be released by written or verbal permission by the person or organization identified. Verbal permission can only be given for a specific release. Any general release must be in writing. The SADS Foundation and SIRCh web sites provide links to other sites that may be of interest. SADS Foundation is not responsible for the privacy practices or content of other such web sites.
SADS Foundation is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to SADS Foundation staff and board members and other individuals who have a need to use such information in the course of their work on approved projects. All individuals will be instructed in the confidentiality requirements of the organization.
Privacy Policy
You must read the SADS International Registry of Channelopathies (“the Registry”) Privacy Policy (the “Privacy Policy”) and the Registry (defined below) terms and conditions (the “Terms and Conditions”) prior to using any portion of the Registry. By using the Registry, you agree to all the terms of the Privacy Policy. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Registry. The Registry is owned and operated by the SADS Foundation. SADS Foundation respects your privacy and has written the Privacy Policy so that you are aware of the information the Registry collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that SADS Foundation is not abiding by its posted Privacy Policy, please contact us via registered mail, by phone, or by email at:
Family Support Director
SADS Foundation
508 E South Temple
Salt Lake City, UT 84102
By phone: 801-531-0937
Email:
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1. General
a. SADS Foundation has the highest regard for your privacy. We realize that our service can only work if we build trust with our user communities. For that reason, our first priority is making sure users are confident in the security of the data they share with us. The Privacy Policy outlines the type of information the Registry collects from the users of the Registry and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the Registry. We encourage you to review the Privacy Policy periodically for any updates or changes.
2. Collection, Use and Disclosure of Information
a. Collection of Information. All of the information you provide to the Registry will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent.
b. Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identification has been removed) gathered from this profile will be made available to registrants of the Registry in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. SADS Foundation will perform the searches for specific questions within the Registry and provide reports back to you and the medical research community.
SADS Foundation may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Registry or to the services provided on the Registry, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Registry and the services provided on the Registry. These Outside Contractors may have limited access to information collected on the Registry, including personally identifiable information, in the course of providing such products or services.
3. Withdrawal of Information
a. At any time, you reserve the right to withdraw your information from the Registry database by contacting the SADS Foundation coordinator at
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and your profile will be removed.
4. Protection of User Information
a. All users are required to review and abide by the Registry Terms and Conditions and the Privacy Policy. SADS Foundation will use commercially reasonable methods to protect the security of information and data submitted to the Registry. We employ best practices from our networking to our secure servers to protect your data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Registry, you should take special care to safeguard them.
5. Ownership of Information
a. All of the information you provide to SADS Foundation in connection with the Registry is owned by SADS Foundation.
6. Third Party Notifications/Advertising
a. SADS Foundation reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Registry. These companies may use information you provided on this Registry (excluding your name, address, email address or telephone number) and other sites in order to provide advertisements or relevant notifications on the Registry and other sites about goods and services that may be of interest to you. SADS Foundation will encourage such companies to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Registry; however, SADS Foundation assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
7. Cookies
a. When you visit the Registry, we may send one or more cookies to your computer that will uniquely identify your browser. In addition, in the course of serving advertisements to this site, our third-party advertisers may place or recognize a unique "cookie" on your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by SADS Foundation to enable it to track and target the interests of users to enhance their experience on the Registry. Usage of a cookie is in no way linked to any personally identifiable information while on the Registry. If a user rejects the cookie, they may still use the Site. Some of SADS Foundation’s business partners, advertisers and sponsors use cookies, but Dup15q SADS Foundation has no access to or control over these cookies.
8. Log Files; Web Beacons
a. SADS Foundation may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information. SADS Foundation may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
9. Website Links
a. The Registry may contain links to other Web sites. The Privacy Policy applies solely to information collected on or submitted to the Registry. SADS Foundation is not responsible for the privacy practices of other sites linked to the Registry or third party advertisements served on the Registry. SADS Foundation encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Registry.
10. Communications From SADS Foundation
a. From time to time, SADS Foundation or other related entities will notify users of updates and other valuable information about SADS Foundation, the Registry and related clinical and research information. By using the Registry, or registering or subscribing for services provided on or through the Registry, users consent to being contacted by SADS Foundation and related entities, and to receiving such updates and information. SADS Foundation encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, SADS Foundation cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from SADS Foundation, such emails will clearly be from SADS Foundation and will include instructions on how to unsubscribe from future emails.
11. Required Disclosures
a. You understand and agree that SADS Foundation may disclose information provided if in its good faith belief such disclosure is required by applicable law.
12. Contact Us; Member Accounts
a. If a user elects to contact SADS Foundation through contact information provided on the Registry, or registers for an account, the user may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing their inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). SADS Foundation stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then owned by SADS Foundation and subject to the terms detailed in the Privacy Policy.
13. Children Under The Age Of Thirteen (13)
a. SADS Foundation is unable to prevent children under the age of thirteen (13) from visiting the Registry; however, no part of our Registry is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Registry at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, SADS Foundation will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Registry including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, SADS Foundation learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, SADS Foundation will take the appropriate steps to delete such information.
14. Notification Of Changes
a. You should review the Privacy Policy whenever you use the Registry in order to be aware of the ways that your information is used. SADS Foundation reserves the right to change the Privacy Policy at any time, without prior notice.
