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 email@example.com, 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.
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.
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 firstname.lastname@example.org and your profile will be removed.
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.
The Preeclampsia Foundation's published research results.
Frequently asked questions about the Preeclampsia Registry, a patient-driven registry and biobank.
The Preeclampsia Foundation offers research funding, study recruitment, and other patient engagement services to researchers.
We provide research grant funding to advance progress towards detection, prevention, or treatment of preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy.
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