Preeclampsia Registry Privacy Policy

The Preeclampsia Registry is committed to protecting the privacy of our families. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, we make it available as a link on our home page. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and non-public information included in your correspondence with us.

When you contact the Preeclampsia Registry Coordinator at registry@preeclampsia.org, your email address and other information included in your email may be forwarded to the appropriate person(s) within the Preeclampsia Foundation or our professional advisors for a response. A copy of your correspondence may be retained at the Preeclampsia Foundation home office and also by the responding individual.

The Preeclampsia Registry has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, physicians, scientists, contributors and others interested in hypertensive disorders of pregnancy, such as preeclampsia, HELLP syndrome, and eclampsia. The Preeclampsia Registry will never release the mailing list or the names of member families to any outside organization or third party unless required to do so by law. However, if an outside organization sends us information for distribution to The Preeclampsia Registry families, we may mail it to you after the Board approves the mailing.

Information determined to be confidential can only be released by written permission by the subject of the information or organization that owns the information.  Any general release must be in writing. The Preeclampsia Registry web site provides links to other sites that may be of interest. The Preeclampsia Registry is not responsible for the privacy practices or content of other such web sites.

The Preeclampsia Registry 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 privacy and security of all personal information in our possession. Access to personal information will be limited to The Preeclampsia Registry Advisory Board members and other individuals who have a need to use such information in the course of their work on approved projects. In all instances, this work will be directly overseen by a member of The Preeclampsia Registry Advisory Board. All individuals will be instructed in the confidentiality requirements of the organization.

You must read this Privacy Policy (the “Privacy Policy”) and the Website (defined below) terms of use (the “Terms and Conditions”) prior to using any portion of The Preeclampsia Registry Website located at  (the “Website”). By using the Website, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website.

The Website is owned and operated by the Preeclampsia Foundation, a nonprofit organization. The Preeclampsia Registry respects your privacy and has written the Privacy Policy so that you are aware of the information The Preeclampsia 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 The Preeclampsia Registry is not abiding by its posted Privacy Policy, please contact us at: registry@preeclampsia.org

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General

a. This Privacy Policy outlines the type of information The Preeclampsia Registry collects from the users of the Website 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 Website. We encourage you to review the Privacy Policy periodically for any updates or changes.

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Collection, Use and Disclosure of Information

a. Collection of Information. The Preeclampsia Registry may collect names, email addresses and other personally identifiable data about visitors when such data is voluntarily submitted to preeclampsiaregistry.org.  All of the information you provide to The Preeclampsia Registry will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.

b. Use and Disclosure of Information. The Preeclampsia Registry may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the Website, 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 Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including protected health information and personally identifiable information. In the course of providing such products or services, Outside Contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information and will be contractually obligated to abide by this Privacy Policy.

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Withdrawal of Information

a. At any time, you have the right to withdraw your information from the Website registry database. You may exercise this right by contacting The Preeclampsia Registry Coordinator at registry@preeclampsia.org and your profile will be removed.

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Protection of User Information

a. All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy. The Preeclampsia Registry will use commercially reasonable methods to protect the security of information and data submitted to the Website. We employ best practices from our networking to our secure servers to protect 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 Website, you should take special care to safeguard them.

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Cookies

a. When you visit the Website, we may send one or more cookies to your computer that will uniquely identify 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 The Preeclampsia Registry to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, he or she may still use the Website. Some of The Preeclampsia Registry’s business partners, advertisers and sponsors use cookies, but The Preeclampsia Registry has no access to or control over these cookies.

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Log Files; Web Beacons

a. The Preeclampsia Registry 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 Website, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. The Preeclampsia Registry 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.

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Website Links

a. The Website may contain links to other web sites. This Privacy Policy applies solely to information collected on or submitted to the Website. The Preeclampsia Registry is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website. The Preeclampsia Registry encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.

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Contact Us; Member Accounts

a. If you elect to contact The Preeclampsia Registry through contact information provided on the Website, or register for an account, you may be asked for any of the following: name, password, e-mail address, and certain profile and account information (in the case of a member account registration). The Preeclampsia Registry stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

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Children Under The Age Of Thirteen (13)

a. The Preeclampsia Registry is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our Website 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 Website at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, The Preeclampsia Registry will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Website 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, The Preeclampsia Registry learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, The Preeclampsia Registry will take the appropriate steps to delete such information.

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Notification of Changes

You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. The Preeclampsia Registry reserves the right to change the Privacy Policy at any time, without prior notice.