Frequently Asked Questions

What is a registry?


A registry is a platform to collect information from people who share the same conditions and/or have similar experiences. This information is shared with researchers to explore new ideas and to conduct multiple studies.




Who can enroll in the Preeclampsia Registry?


1) Women who believe they had preeclampsia or a related hypertensive disorder of pregnancy, such as eclampsia or HELLP syndrome. 2) Family members of a woman affected by preeclampsia or a hypertensive disorder of pregnancy. Relatives can be either female or male to participate. 3) Women who have never had preeclampsia or other hypertensive disorders of pregnancy. These participants will serve as a comparison or “control” group. 4) Legally authorized representatives may enroll and provide information for a woman that has died or is disabled as a result of preeclampsia.




What if I had another form of preeclampsia?


Throughout the registry, the term “preeclampsia” is used to include all hypertensive disorders of pregnancy such as preeclampsia, eclampsia, HELLP syndrome, gestational hypertension, chronic hypertension with superimposed preeclampsia, and others. We encourage you to enroll.




Can I participate if I live outside the United States?


Yes, the registry is available to participants anywhere in the world. However, it’s only available in English and you should only enroll if you can read and comprehend English. We are working to translate the registry to other languages.




Can I participate if I am under the age of 18?


Yes. A parent or guardian will need to review the consent form with you. You may also contact the Registry Manager with any questions. Both you and your parent or guardian will need to agree for you to participate.




How do I enroll?


  1. Create an account here.

  2. Review and approve the consent form.

  3. Answer a series of questions. We will collect the most important information in the first module of questions (A Quick Overview), which will take approximately 10-15 minutes to complete. The entire enrollment survey can take up to an hour to complete. You don’t have to finish it all at once.




What else will be expected from me?


After enrollment in the registry, and with your permission, you may be asked to:

  1. Provide a health update for you and your child/children at least once a year. We would also like you to add new pregnancies, if applicable.
  2. Answer new questions when researchers have new ideas to explore.
  3. Consider enrolling in additional studies.
  4. Donate a sample of blood or saliva for additional studies. (If you decide to donate a sample, you will need to provide separate consent)
  5. Upload or give permission for us to request your medical records. This may help us to validate and verify the information you entered into the registry. You will have access to any records we collect.




Will you collect blood or other biological samples for research?


Some registry participants will be invited to provide a saliva or blood sample to be stored and used for various studies. You can decide if you would like to be contacted about providing a sample as you review the registry’s consent form. If you are invited to provide a sample, you will be asked to review and agree to an additional consent form.




Will you ask me to participate in more research?


You have the option to be contacted about joining other clinical trials and studies you may qualify for. We may contact you about answering new questions launched in the registry.




What are the risks?


There is minimal risk in participating in the registry. There are some questions that may make you feel uncomfortable, but you don’t have to share any information you don’t want to. You can take as much time as you need to complete the questionnaire and may skip questions that you feel are too personal.

There is an unlikely chance of a data breach in which some of your personal information may be illegally accessed from our secure servers and database. Although we have extremely tight security measures, we will let you know if this happens.




Who do I contact if I have questions about the registry?


Call the Registry Manager, Alina Brewer, at 801-994-4103 or email at registry@preeclampsia.org.




Will anyone else know my name or be able to contact me?


Your personal information such as your name, address, or other information that identifies you or your family will be labeled with a code number, encrypted, stored in a secure place, and protected with a password. Your identifiable information will not be shared with anyone outside the Registry. Approved scientists, researchers, and clinicians will only receive de-identified information. We call this information “de-identified” because all personal identifiers have been removed.

All other information (such as hard copies of records) will be stored in locked files in accordance to the standards established by the HIPAA Privacy Act. To review the entire HIPAA Privacy Act, and for additional information, see the Office for Civil Rights website: http://www.hhs.gov/ocr/hipaa.




Can insurance companies access my information?


Insurance companies are not permitted access to research records, and you do not have to tell your health insurance that you are participating in the registry.




Who is paying for the registry?


The Preeclampsia Registry is a research program operated and paid for by the Preeclampsia Foundation. There is no cost to you to participate. As a 501(c)(3) non-profit organization, the foundation's mission is made possible through individual and corporate donations. If you would like to support this and/or other initiatives, please consider giving a donation here. You may also contact our Director of Development to discuss corporate or major gift support.




Will I be paid to participate?


You will not receive compensation for participating in the registry.




What if I decide I don’t want to participate?


You can withdraw from the registry at any time and are free to do so without providing any explanation. However, we may not be able to retrieve information that was already accessed by researchers prior to your request. You may withdraw your participation by writing an email to registry@preeclampsia.org or by writing a letter to:

Eleni Tsigas

Principal Investigator
Preeclampsia Foundation
3840 W. Eau Gallie Blvd, #104

Melbourne, FL 32934





What if I made a mistake when completing my questionnaire?


Your questionnaire is locked to any changes after you click "submit" in order for us to protect the quality of the information we gather. If you think you've made a mistake or recently learned of new information that would have impacted your responses, simply email the Registry Manager at registry@preeclampsia.org for assistance.




How do I provide an update on my or my child's health or add a new pregnancy?


The registry is most valuable when your information is kept up-to-date. Log-in and select "Provide an Update" from your MyRegistry page. From there you have the option to provide a health update for you or your child or add a new pregnancy.




I forgot my username or password. What should I do?


Select “Forgot Password” on the log-in page and check your email to receive a temporary password. When you log back in, you will be prompted to change your password. If you experience any issues, email the Registry Manager at registry@preeclampsia.org for assistance.





 
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