Private Data: When you create your Pregistry account, we require information that identifies you personally such as your name and email address. Your name and email address will never be shared with anybody outside of Pregistry. Your password is encrypted from the moment you submit it. Therefore, no one else, apart from you, knows what your password is.
Shared Data: Shared Data is any information you provide on Pregistry that is not Private Data. This includes any comments you make in the social forums and photos you submit in Pregistry's site and/or Pregistry's social media channels. Shared Data are shared publicly on Pregistry to help other users. Also, unless you opt-out, we may share them with trusted Pregistry partners, such as medical researchers and collaborators. Your name and email address will never be shared.
Statistical Data: We share statistics about our users publicly on Pregistry and with trusted Pregistry partners, such as medical researchers and collaborators. Your name and email address will never be shared.
Control your privacy: Do not publicly share information that can be used to identify or contact you. For example, do not write your name or email address in a social forum or in a social media channel. Share publicly as much or as little about your experiences as you want without sharing name and email address.
Opt-out of sharing Shared Data with trusted Pregistry partners. After you log in, click the opt-out button at the end of this page if you prefer not to share your anonymous Shared Data. You will not find the opt-out button until you log in.
1. Pregnant and breastfeeding women and their healthcare providers do not have enough real-world information to be able to weigh the risks and the benefits of using medical products (medications, vaccines, devices) during pregnancy and lactation in order to make informed healthcare decisions.
2. Pregnant and breastfeeding women are currently using medical products but there is little, if any, systematic collection and analysis of their experiences. Their information could inform and transform health care practice and result in healthier (and less worried) mothers and babies.
3. When you share information about your real-life health experiences on Pregistry, you help others understand their options.
Pregnant and breastfeeding women are willing to share information about the medical products they use in order to help other women.
The success of Pregistry depends on pregnant women’s participation. We know that women have concerns about privacy, and we take your privacy very seriously (see more information below). We want you to know exactly what we do with the information you share with us, so you will have the information you need to decide whether or not to use the website, including its programs and services. Remember, you are free to sign-up for Pregistry’s programs once you create an account, regardless of whether you share additional information with us.
Pregistry is also a space where pregnant and breastfeeding women can share their experience.
When you create a Pregistry account, you create a profile that includes, at a minimum, your first name, last name, password, and email address. After you log in, you can edit your profile by clicking on the “Edit Profile” tab, although you cannot edit the email address. You may also provide (it is not mandatory) your home address, phone number, and date of birth.
You may also want to use various features that collect and the process certain personal or medical information, such as "My gestational age" widget, "My Calendar", and "My doctor's details". In addition, you may be asked to provide specific information about yourself pertinent to the question you are asking in the "Ask Our Experts" program, where you send a question to a Pregistry expert.
We collect and use all of the information you provide on Pregistry, and take reasonable security measures to protect that information. However, be mindful that any information you submit is transmitted through channels and third parties outside of our control and is done so at your own risk.
In addition, when you participate in Pregistry's communities (social forums and social media channels), you may elect to share information, including your confidential information, although we discourage you from doing so. That information will be in the public domain and Pregistry is not responsible for who might see or respond to it, nor is Pregistry responsible for how this information is shared, reproduced, or disseminated by others.
Pregistry may also periodically ask our members to complete short surveys about their experiences (including questions about products and services).
We do ask Pregistry members to share some demographic information with us so that we can understand who is using our services and to improve our website and operations. Answering those types of questions is always optional.
Pregistry is interested in better understanding our users’ experiences with medications and vaccines during pregnancy and breastfeeding to improve treatment options and health outcomes for everyone. Pregistry may provide its data, in individual or aggregate format, to government agencies, academic and clinical researchers, and other third parties for use in scientific research and market research. When sharing aggregated data, Pregistry removes personally identifiable information. When sharing individual data, Pregistry removes information generally used to identify a person (for example, name, birthdate, place of birth, and address) to reduce the likelihood of a particular member being identified. However, in the event of a rare pregnancy outcome (for example, a symptom affecting 1 in 10,000,000 women), a member could possibly be identified just based on a description of the medical information about the outcome.
Survey responses are analyzed, and may be shared with and/or sold, without any personally identifiable information, to other parties for medical, marketing or commercial purposes. Participation in these surveys is voluntary (not required).
Although Pregistry uses your data internally, as needed, for research, it may also use your data internally for maintenance and operation of the programs and website and to create the best possible tools and functionality for users. We do not use sensitive personal data for advert targeting. Topics we choose for targeting adverts don't reflect the personal beliefs, characteristics or values of the people who use Pregistry. Pregistry may use a member’s data in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the member. Pregistry may share or disclose a member’s data: (1) to comply with valid legal requirements such as a law, regulation, search warrant, subpoena or court order; or (2) in special cases, such as a physical threat to you or others, a threat to homeland security, a threat to our system or network, or cases in which we believe it is reasonably necessary to investigate or prevent harm, fraud, abuse, or illegal conduct.
Pregistry, like most internet communities, is a public forum, and members acknowledge and accept that any information shared through free text or images might be viewed by anyone on the internet and may be able to be connected to the member. Members are cautioned to use discretion when entering personal information that can be viewed on the Pregistry website. Because the value of Pregistry is in sharing one’s experiences to help others, we hope that members feel comfortable participating in all of our programs to the benefit of themselves and others.
Please note that, in general, once you have submitted information to any of the Pregistry communities, we may not be able to delete that information from the Internet, since other users may have shared your submission. If you wish to remove your information from Pregistry's communities, email us at firstname.lastname@example.org. We will consider your request on an individual basis and we may (but are not obligated to) take steps to delete your information.
Some of your information may be stored in archived or backup copies for our records or as required by law. We are not responsible or liable for the removal or deletion of (or the failure to remove or delete) any of the information that you provided to us. You can, of course, choose to unsubscribe from any email from Pregistry via the link provided in the email.
If all or part of Pregistry is sold, merged or otherwise transferred to another entity, the personal information you have provided at this site will be transferred as part of that transaction.
Allowing Pregistry to share your anonymous submission information (your User Content, as more fully explained under the Terms and Conditions) with third parties may help improve the pregnancy and breastfeeding experience of other women. However, if you do not wish us to share your User Content with third parties, after you log-in you can opt-out of sharing your User Content with third parties. We will add a cookie (an invisible marker) to your browser so that we know not to share any future User Content you submit.
We may share your anonymous data, individually or collectively, with our partners. However, we will never share your identifying information.
1) Stop sharing with third parties (you can still share on Pregistry with other users),
2) Stop sharing from now on (information you submitted before opting-out may still be shared with third parties), or
3) Stop sharing individual information only (you can still be included in aggregate data we share with our partners).
Remember: Since we track your opt-out with a cookie, if you delete your cookies, you’ll need to opt-out again.
Your anonymous Shared Data may be shared with our partners. We will never share your identifying information.
Feel free to contact us regarding your privacy.