You’ve probably heard the statistics: Black women are more likely to die in childbirth.[1] Black women are more likely to have poorer birth outcomes.[2] Black women are at greater risk for preeclampsia.[3]
Change starts now by purposefully including and elevating the perspectives of Black moms in preeclampsia research. Your story could change hers.
Take 10 minutes to complete the intake survey of the Preeclampsia Registry and add your pregnancy experience to preeclampsia research efforts. Whether you have had preeclampsia, had a loved one who experienced it, or just want to contribute your pregnancy history to improve outcomes, everyone has a role they can play to improve research by, for, and about Black and Brown moms. The vast majority of people who participate in clinical trials are white, so there simply is not enough research about how preeclampsia affects Black and Brown women, or the different way in which we experience maternal healthcare. We deserve better. The Take Ten campaign is a call-to-action to our resilient community of Black women.
Ten minutes of your time ensures that communities of color are better represented, informed, and equipped to save the lives of future Black and Brown mothers. These are our daughters, our nieces, our granddaughters, our sisters, our friends – and they deserve better pregnancy outcomes through research that supports and represents their distinct experiences.
The Preeclampsia Registry is committed to keeping your data safe, secure, and confidential. Learn more in our FAQs section.
We are thrilled to be advised by wonderful patient, family, and healthcare provider advocates for this campaign. Big thanks to our wonderful Take 10 Patient Ambassadors and our Patient Focus Group members. Click to read their stories.
Interested in becoming a Take 10 Ambassador? Learn more here.
This work could not be done without the fantastic organizations led by and focused on Black voices. We’re grateful to walk beside you in this work. Want to join this partnership? Contact us!
The Preeclampsia Registry is a place where women that experienced a hypertensive disorder of pregnancy, like preeclampsia, can participate in several research studies. Since its launch in 2013, the registry has made 16 different research studies possible with many new studies added each year.
Here is what you can expect from joining:
The Registry is a “living database” where new ideas are generated and updates from you are valuable to research. We will contact you by email periodically for the following:
The people who volunteer for research studies are vital in preventing, detecting, and treating diseases like preeclampsia. A diverse research participation group ensures everyone is included in life-saving research!
Who will have access to my information?
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 staff. We call this information “de-identified” because all personal identifiers have been removed.
All researchers seeking to use information from the Preeclampsia Registry, are required to undergo an application, review, approval, and data use agreement process. Researchers will only receive “de-identified” information.
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.
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.
[1] Petersen EE, Davis NL, Goodman D, et al. Racial/Ethnic Disparities in Pregnancy-Related Deaths — United States, 2007–2016. MMWR Morb Mortal Wkly Rep 2019;68:762–765. DOI: http://dx.doi.org/10.15585/mmwr.mm6835a3external icon.
[2] American College of Obstetricians and Gynecologists and the Society for Maternal–Fetal Medicine, Kilpatrick SK, Ecker JL. Severe maternal morbidity: screening and review external icon. Am J Obstet Gynecol. external icon2016;215(3):B17–B22.
[3] Healthcare Cost and Utilization Project (HCUP); Agency for Healthcare Research and Quality (AHRQ), “Delivery Hospitalizations Involving Preeclampsia and Eclampsia, 2005-2014,” April 2017. AND Boakye E, Kwapong YA, Obisesan O, et al. Nativity-Related Disparities in Preeclampsia and Cardiovascular Disease Risk Among a Racially Diverse Cohort of US Women. JAMA Netw Open. 2021;4(12):e2139564. doi:10.1001/jamanetworkopen.2021.39564
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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