Respect the 'Big P': A Closer Look at Preeclampsia

March 22, 2016

Kecia Gathier, M.D., MPH, FACOG - Spring has graciously sprung and with it has come new opportunities, new alliances, and of course new perspectives. As a maternal fetal medicine specialist, my daily menu of high-risk complications like preeclampsia (or as I call it, ‘The BIG P’) is commonplace — something general OB/GYNs, countless other maternal fetal medicine specialists (present company included) see regularly. Being that this disease is pervasive and constitutes the bane of the existence of any physician caring for pregnant women who have it, my perspective was that EVERY pregnant woman had heard of the disease from their doctor. 

Recently, I had the honor of participating in a focus group, which I had expected would be a healthy dialogue on the subject, alongside some peers, pregnant and postpartum patients about the known issues surrounding the disease. Imagine my surprise to realize my perception was NOT reality, and that in fact there was a far greater problem to solve for, as there existed an all-around lack of knowledge about the ‘BIG P.’

I listened to survivor after survivor share how they never heard of this disease until their diagnosis... SO I elected to mount my soapbox and address, as it was apparent the current awareness level is at an extreme low. The lack of knowledge places at stake the health of all expecting mothers and unborn babies who are unaware of WHAT to look for and HOW to manage this harrowing condition.

To begin, preeclampsia is a disease that affects pregnant women, often presenting itself with high blood pressure, high levels of protein in the urine and swelling of the legs — symptoms all discoverable via routine evaluation during prenatal care checkups. Generally presenting itself in the latter half of the second trimester of pregnancy, “The Big P” is NOT prejudicial when choosing its victim; it is NOT a respecter of age, demographics, and social strata and is extremely detrimental to the health of its entire afflicted — mother and unborn child — regardless of religion or ethnicity. It is a great imitator, as some of its clinical presentations can mimic other diseases. If it is not recognized and treated in the early stages, it can be potentially fatal. 

Here’s the kicker — there are no medications known to CURE preeclampsia — the ultimate treatment is the delivery of the baby, regardless of gestational age. Although rare, it can represent itself even AFTER delivery, and can cause issues years postpartum by increasing the mother’s risk of developing cardiovascular disease later in life.

1. So, what causes it? To date, the cause is unknown however abnormalities in the way the placenta implants and ultimately functions have been thought to be part of the puzzle. Genetics, diabetes, high blood pressure, thyroid disease, clotting disorders and diseases where the body attacks itself — such as Lupus — are among some of ‘The Big P’s” proposed contributing factors.

2. Who gets ‘It?’ While ALL women carry a potential risk, preeclampsia is seen more often in African-American women, women at extremes of age (early teens to women over 40), those with certain underlying medical conditions; in addition to the aforementioned, diabetes, prior birth of multiples and those who have a prior history of preeclampsia.

3. What are the symptoms? It is important to note that preeclampsia can manifest itself along a continuum; headaches (which may mimic migraines) and abdominal pain (which may mimic appendicitis) are the most common features and must be carefully monitored, as they can be early indicators of impending stroke or potential liver rupture. Mild symptoms include benign blood pressure elevation, protein in the urine, and extremity swelling from fluid retention. The severity of symptoms can rapidly progress, as seen by patients having markedly elevated blood pressures, seizures, fluid in the lungs, separation of the placenta, blindness, kidney failure, liver rupture or death of the mother/stillbirth of the baby.

4. So...treatment? As stated above, the ultimate treatment for preeclampsia is delivery of the baby, however temporizing measures may be given to the mother — medications to stabilize the blood pressure, prevent seizures and to enhance the lung development of the developing fetus. It’s important for the baby to be able to breathe on its own outside of the womb; to promote this ability, steroid injections are given to the mother to rapidly move along the process of lung development in the baby. Depending on the severity of preeclampsia, the delivery of the baby may be undertaken within as early as a 48-hour period. Milder cases may be handled with close medical observation.

There are a number of clinical trials currently under way throughout the United States that utilize various treatment modalities in an effort to prevent and/or modulate the disease from a genetic, immunologic or hematologic standpoint. To name a few:

The use of Metformin — this is a drug used SPECIFICALLY for diabetes; it keeps the blood sugar regulated. However, metformin may prove to have a ‘bonus; use in preeclamptic patients by removing abnormal chemicals found in their blood which damages the blood vessels - such as those feeding the placenta, brain, kidneys — throughout the mother’s body. These damaged vessels prevent adequate oxygen, nutrients and blood flow going not only through the mother’s body but also to the baby. Metformin may prevent this occurrence.

Anti thrombin (Recombinant) — this is a man-made protein molecule that keeps blood from clotting in the blood vessels throughout the body. For women who are experiencing preeclampsia, the anti-thrombin levels are found to progressively decline as the disease becomes more severe. The goal in giving this drug is threefold — to bring the anti-thrombin levels back to normal, slow the progression of the disease and prevent the damage to blood vessels, ultimately allowing for normal blood flow, providing oxygen and nutrients to mother and baby through circulation.

There ARE some medical conditions that can mimic preeclampsia, so it’s important to definitely distinguish the presence or ABSENCE of preeclampsia as the treatment may be radically different, ultimately impacting upon the well being of the mother and baby. Currently, no screening test for this disease exists. On the horizon - Elecsys Assay. Certain proteins are responsible for normal functioning of the placenta, which in preeclamptic women may become unbalanced, ultimately resulting in the placenta functioning abnormally. The presence of these unbalanced proteins by the Elecsys Assay testing system can potentially assist physicians in determining whether a mother does or does NOT have the disease. Stay tuned for more on this test.

So, to all the women dealing with or who have dealt with this disease, realize that your voices have been heard and your experiences have not been in vain. The final lesson for all is that knowledge is power. Remain vigilant and above all, have the utmost respect for the “BIG P.” It may just save your life.


**To learn more about Preeclampsia and/or connect with those affected with the disease, click here.

Originally published by The Huffington Post: http://www.huffingtonpost.com/kecia-gaither-md-mph-facog/respect-the-big-p-a-closer-look-at-preeclampsia_b_9508022.html

Community Foundation for Brevard Awards 2015 Medical Research Grant to Preeclampsia Foundation

August 26, 2015

Melbourne, Florida- The Community Foundation for Brevard has awarded the Brevard-based Preeclampsia Foundation a Medical Research Grant in the amount of $22,500 from the Kenneth R. Finken and Dorothy Hallam Finken Endowment Fund. This grant will extend research funded last year by the Community Foundation to study preeclampsia and its impact on the long-term health of mothers and infants through The Preeclampsia Registry™.

“This grant extends research funded in 2014 to study the genetics of preeclampsia and its association with cardiovascular disease, both of which have dramatic impact on the health of women and children,” said Eleni Tsigas, Executive Director of the Preeclampsia Foundation. “We aim to develop innovative mobile health technology to follow women with prior preeclampsia long-term and to further our genetic studies of the preeclampsia/cardiovascular disease relationship. These efforts will provide an enormous contribution to finding a cause of preeclampsia and to facilitating timely therapeutic intervention for both preeclampsia and cardiovascular disease.”

“This  unique medical research with the Brevard-based Preeclampsia Foundation is not only going to benefit mothers and babies world-wide, it also leads to a better understanding of the cause and treatment of cardiovascular disease in women,” said Sandi Scannelli, President/CEO of the Community Foundation for Brevard.

The first of its kind to focus solely on hypertensive disorders of pregnancy, The Preeclampsia Registry captures self-reported and clinical information as well as family and pregnancy history. Overseen by an Institutional Review Board, the registry ensures participants’ privacy and rights in medical research by sharing only de-identified information with approved scientists, researchers, and clinicians.

(From left) Preeclampsia Foundation Executive Director Eleni Tsigas gratefully accepts a
$22,500 medical research grant award from the Community for Brevard’s
Lisa Davidson, Grants & Program Manager, and Community Foundation Board Members
Robert Naberhaus III and Juliana Kreul.

The Preeclampsia Registry tops 2,000; what this means for research

August 10, 2015

The Preeclampsia Registry™ has enrolled more than 2,000 participants since its launch in September 2013. Sponsored by the Preeclampsia Foundation, The Preeclampsia Registry is the first of its kind to focus solely on hypertensive disorders of pregnancy, bringing together survivors, family members, and researchers from all over the world. Its purpose is to develop a comprehensive picture of preeclampsia to help discover preventions and treatments, including ones that will reduce the disorder’s long-term health impact.

As the online patient and family database for those affected by preeclampsia and related hypertensive disorders of pregnancy, The Preeclampsia Registry has been designed to aid and accelerate preeclampsia research. Women who have experienced preeclampsia and related disorders may enroll and participate, along with their family members and even friends who were not affected to serve as research “controls”.

The Preeclampsia Registry captures self-reported and clinical information, and family and pregnancy history. We began collecting biological data earlier this year and are completing our current project of sample collection for the registry’s biobank. So far, we have collected more than 500 samples from preeclampsia survivors and their sisters, partners, and children that will help us study preeclampsia’s connection to cardiovascular disease.

Presently, there are six ongoing research initiatives in different phases of completion. One is looking at the genetics of symptoms that women experience, or don't experience. Another will analyze the 'patient journey' from illness to diagnosis to management.

Each participant’s story, medical and pregnancy history, and ongoing health reporting can help scientists unravel the pieces of the preeclampsia puzzle. By allowing us to review your medical records pertaining to preeclampsia, we are able to verify the information you are entering into the registry. This is very important to some research studies. We encourage participants to provide their full medical records and are here to help them make the request to their doctors and/or hospitals. Overseen by an Institutional Review Board, the registry ensures participants’ privacy and rights in medical research at all times.

Participants can view charts and graphs in the "How Did Others Respond?" section on their “My Registry” page and may find data interesting to them. They can find out if other participants experienced the same symptoms or treatments. Because confidentiality is our top priority, no names or identifying information appears on the reports and statistics are displayed as percentages. Participants also have the ability to pose their own research questions in the “My Registry” section of this website.

According to Alina Brewer, Research Coordinator for The Preeclampsia Registry, “There’s a tremendous need for cultural diversity in the registry. Studies are most accurate when they can mirror the population affected by a disease, and increasing our racial and ethnic representation will help investigators gain a better understanding of the characteristics of this disease and validate The Preeclampsia Registry as a valuable resource.”

Participants help create a significant resource for researchers to gather data, start new studies, and make discoveries that will positively affect health outcomes for mothers and babies for many generations to come.

Our goal is to enroll more than 10,000 participants and achieve closer representation of all those affected by hypertension during pregnancy. For more information or to enroll, go to www.preeclampsiaregistry.org or contact Alina Brewer at registry@preeclampsia.org.

What's a Registry?

August 09, 2015

The Preeclampsia Foundation is not a university or research hospital, and like most other patient advocacy organizations, it does not own a state-of-the-art laboratory in which to conduct complicated experiments. However, the Preeclampsia Foundation is a large community of survivors, families, and friends joined in the search for an end to this devastating disorder. With so many questions and theories as to the cause and management of preeclampsia, a patient-driven registry (such as The Preeclampsia Registry) provides survivors and their families an opportunity to play a key role in preeclampsia research.

There are different types of registries that can serve different purposes, but ultimately, a patient registry is a platform to collect information from people who share the same condition and/or have similar experiences. In recent years, patient advocacy and rare disease organizations have become critical contributors to research through patient-driven registries. Often faced with financial barriers, these organizations have sought the most effective avenues to conduct research and create the most impact. Furthermore, these organizations consist of communities of volunteers who are enthusiastic to move research forward, and looking for ways to help, can create a resource unmatched in the clinical research arena.

Participating in a registry will mean answering some questions about your experience with the condition (from a few to over a hundred). Today many registries collect this information over the Internet; however, others may collect this information at a doctor’s office or by phone with a research assistant. Some registries may ask you to provide a copy of your medical records (or permission to release them), and you may also be asked to periodically update your health information.

You may be wondering where this information goes and how it helps to accelerate research. Some researchers just need information (or data) to test their theories, while others also need research participants to enroll in clinical trials. Registries can expedite the research process by providing researchers with valuable information and participants that would otherwise have been more difficult and time consuming to achieve.

The Preeclampsia Registry, for example, provides approved researchers with access to “de-identified” health information – information that does not contain participant names or contact information. This helps researchers to find patterns among preeclampsia survivors that can lead to findings and further studies. Researchers may also pose new questions to a large and willing audience, a strategy that usually takes much longer without a registry.

The Preeclampsia Registry also gives its participants the option of learning about other research studies of which they may qualify and provides them with the means of connecting with these researchers.

Most importantly, patient registries unite the patient voice with clinical research. Patients have questions, theories, and interests that are often different from investigators conducting formal research. By engaging patients in the research process, as we can through patient registries, the chances for discovery and improvement are an even greater possibility.

For more information about patient registries, visit http://www.nih.gov/health/clinicaltrials/registries.htm        

To learn more about The Preeclampsia Registry, go to www.preeclampsiaregistry.org

Maternal recall of pregnancy complications may aid prediction of future CVD risk

July 18, 2015

Source: Healio Cardiology Today

Many women who have given birth are able to recall key pregnancy complications, including history of gestational diabetes, low infant birth weight and early gestational age at delivery, for an average of over 4 years postpartum, according to recent findings.

Gleaning this information using a validated survey instrument may help to predict future maternal CVD risk, the researchers wrote.

Researchers administered a maternal recall questionnaire to 971 women who had participated in a previous maternal cohort study. The questionnaire was based on a literature review of maternal recall data regarding gestational diabetes, preeclampsia, birth weight and gestational age at birth.

Participants were asked about each pregnancy complication in a number of ways to identify a subset of best-performance questions, determined through a joint review of all test statistics for each question in relation to the other questions. The researchers calculated prevalence, sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV) and/or Spearman’s correlation coefficients (r) for each question.

Of the 971 women re-contacted for the survey, 526 (54%) responded. Compared with those who did not respond, survey respondents had a greater likelihood of being older, white, educated and not having given birth, and they were less likely to deliver infants with low birth weight during the study pregnancy.

Gestational diabetes was observed in 7.4% of women, 7.2% had preeclampsia, 12% had hypertension associated with pregnancy, 7.2% delivered an infant with a low birth weight and 14.8% delivered preterm.

The women had a mean recall length of 4.35 years postpartum. The most accurate recall was demonstrated for gestational diabetes (sensitivity: 91.9%; specificity: 98.1%; PPV: 79.1%; NPV; 99.3%) infant birth weight (r = 0.95), and length of gestation (r = 0.85). The participants showed only a moderate recall of preeclampsia (sensitivity: 79%; specificity: 96.9%; PPV: 68.2%; NPV; 98.2%) and pregnancy-related hypertension (sensitivity: 59.7%, specificity: 95.1%, PPV: 63.8%, NPV: 94.2%).

“If a woman says that she did not have a pregnancy complication, the consistently high specificity and NPVs observed in this study indicate that her self-report is very likely to be accurate.” the researcher wrote. “Similarly, women seem able to recall [gestational diabetes], gestation length, and birth weight accurately, whereas maternal recall of pregnancy-associated hypertension is less so. Surveys such as this one may prove useful indicators of a parous woman’s [CV] risk.” – by Jennifer Byrne

Disclosure: The researchers report no relevant financial disclosures.

Can Pregnancy Complications Predict Future Cardiovascular Risk?

July 07, 2015

New Rochelle, NY, July 7, 2015—According to a new study, women can accurately recall key pregnancy- related information at least 4 years later that could have important implications for their future risk of developing cardiovascular disease (CVD). A simple and brief questionnaire developed and validated by researchers from Washington University School of Medicine (St. Louis, MO), Harvard School of Public Health, and Brigham and Women's Hospital (Boston, MA) is a valuable new screening tool described in an article in Journal of Women’s Health, a peer-reviewed publication from Mary Ann Liebert, Inc., publishers. The article and an accompanying editorial are available free on the Journal of Women’s Health website until August 7, 2015.

Ebony Boyce Carter, MD, MPH and coauthors assessed the accuracy of the responses to their questionnaire—provided by women who were, on average, more than 4 years postpartum—by comparing the answers to information in the women's medical histories. The pregnancy recall tool includes questions about infant birthweight and length of the pregnancy, and pregnancy-related complications such as gestational diabetes, pre-eclampsia, and pregnancy-associated hypertension. The authors report which pregnancy events and information were more commonly recalled in the article “Pregnancy Complications as Markers for Subsequent Maternal Cardiovascular Disease: Validation of Maternal Recall Questionnaire.”

In the Editorial “Pregnancy as a Window to Cardiovascular Disease Risk: How Will We Know?Janet M. Catov, PhD, Magee-Womens Hospital (Pittsburgh, PA) says, “The reproductive years are an ideal time to assess pre-clinical CVD risk and launch strategies to prevent or delay onset of disease in women.”

“This brief tool to gather information on pregnancy-related risk factors for future cardiovascular disease can help clinicians identify women at increased risk,” says Susan G. Kornstein, MD, Editor-in-Chief
of
Journal of Women’s Health, Executive Director of the Virginia Commonwealth University Institute for Women’s Health (Richmond, VA), and President of the Academy of Women’s Health.

 

'Get My Health Data' Campaign Launches

July 02, 2015

Campaign Aims to Remove Barriers, Enhance Demand, and Improve Patient Access to Electronic Health Data

Washington, DC (July 2, 2015) ─ Almost every industry ─ banking, travel, retail, education ─ gives customers powerful tools to manage their lives online. But in health care today, accessing information online is often a confusing and difficult process. Few patients know what to ask for or what information should be available to them, and not nearly enough health care organizations are equipped to meet their requests.

To change that, a diverse and powerful group of patient advocates today launched the Get My Health Data Campaign to support patients in asking for, getting and effectively using their digital health data.

The campaign has three goals: give consumers the information and tools they need to ask for and use their digital health data; identify and promote innovative apps and tools that help consumers securely compile, store and use their health data; and promote a culture in which consumer access to data is the rule, rather than the exception.

“With the Get My Health Data Campaign, we are creating a concerted push from consumers that will liberate digital health information so it gets into the hands of patients and family caregivers, allowing them to more fully engage in their health and care,” said Christine Bechtel, campaign coordinator and advisor to the National Partnership for Women & Families. “Even though we have the technology and policies in place to support patients in accessing their electronic health information, it’s not happening the way it should. Our goal is to enable patients to more easily get and use their digital health information.”

“Over the past five years, doctors and hospitals have widely adopted electronic health records. We’ve declared July 4th ‘Data Independence Day’ because we believe now is the moment when patient demand for their digital health information can flip health care into the open position. Let’s work together to make it practical for people to ask for, share and use their own health data,” added Farzad Mostashari, MD, ScM, former U.S. National Coordinator for Health Information Technology.

More information about the new campaign, including information on how to be successful in requesting data, what to request, patients’ rights to data, resources for providers, and more is available at www.GetMyHealthData.org.

“Too often there are gaps between policy intentions and implementation realities for patients and their families,” said Rebecca Coelius, MD, director of health at Code for America. “We’ve seen that this gap also causes challenges in accessing health data. Code for America has collaboratively built the Vocatus tool to be a simple and free way for patients or their proxies to request medical records, capture whether that request was successful, and provide a feedback loop to health care institutions, the public, and government agencies as part of the Get My Health Data Campaign.”

The Get My Health Data Campaign is coordinated by the National Partnership for Women & Families. Founders include Amida Technology Solutions; Code for America; Genetic Alliance; Health Data Consortium; Farzad Mostashari, MD, ScM; and Aneesh Chopra, former Chief Technology Officer of the United States.

The Preeclampsia Registry Goes Global

September 01, 2014

Since The Preeclampsia Registry™ was launched in September 2013, the online patient and family database for those affected by preeclampsia and related hypertensive disorders of pregnancy has enrolled more than 1,000 participants. Now one year later, the Preeclampsia Foundation is pleased to announce another major milestone - The Preeclampsia Registry's acceptance into the Global Pregnancy CoLaboratory. Funded by the Bill & Melinda Gates Foundation as part of its PRE-EMPT initiative, this international consortium of databases facilitates research that addresses adverse pregnancy outcomes to improve the health of women and their infants.


Global CoLab participants meeting this week in London to discuss goals and philosophies of The Preeclampsia Registry.
 
Preeclampsia and other disorders related to high blood pressure in pregnancy complicate 5-10% of pregnancies, and lead to serious maternal and infant illness or death. In the United States, this life-threatening condition impacts one in every 12 pregnancies. Globally, by conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year. 

The first of its kind to focus solely on hypertensive disorders of pregnancy, The Preeclampsia Registry captures self-reported and clinical information, and family and pregnancy history, and will begin collecting biological data in 2015. Overseen by an Institutional Review Board, the registry ensures participants' privacy and rights in medical research. "The Preeclampsia Registry's partnership with the CoLaboratory is an exciting step forward in advancing preeclampsia research that provides unique data from families and the ability to follow women for many years," said Principal Investigator James Roberts, MD, professor of obstetrics, gynecology, and epidemiology at Magee-Women's Institute & Foundation in Pittsburgh, Pennsylvania, and a member of the Preeclampsia Foundation's Medical Advisory Board. "We are excited to welcome the Preeclampsia Registry to CoLab. This is a valuable addition to our consortium that brings together researchers from all over the world and allows us to share quality clinical data and biological samples, and to facilitate new knowledge generation."
 
CoLaboratory partners represent renowned research facilities in Canada, China, Denmark, Finland, New Zealand, the Netherlands, Norway, Sweden, the United Kingdom, and the US.

The Preeclampsia Registry is open to anyone who has experienced preeclampsia, eclampsia, HELLP Syndrome, or high blood pressure in pregnancy. Family members are also encouraged to participate. To learn more or enroll, go to www.preeclampsiaregistry.org or emailRegistry@preeclampsia.org.

For more information about the Global Pregnancy CoLaboratory, visit the Pre-EMPT website.

The Preeclampsia Registry Growing

July 09, 2014

We've made substantial progress with The Preeclampsia Registry since last month and now have 925 enrolled participants.  This living database brings together those affected, their family members, and researchers to advance knowledge and discover preventions and treatment for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

We're asking participants of The Preeclampsia Registry to upload their medical records, which makes the information collected even more valuable for scientific research by confirming your information with clinical or hospital records. As always, this information is never shared with qualified investigators without de-identifying it first. Your personal information is fully protected as explained in The Preeclampsia Registry's informed consent process.

It's as Easy as One, Two, Three

To Enroll:

    Go to www.preeclampsiaregistry.org and complete the online registry questionnaire
    Allow us to gather information from your medical records
    Return to our website at least yearly to provide an update

To Upload Your Medical Records:

    Contact your healthcare providers to check if they offer online portals for patients to access, download, and share their medical records (if this service isn't available, gather your medical records directly from your providers)
    After you've enrolled, log onto www.preeclampsiaregistry.org and go to "MyRegistry"
    Use the "Upload Medical Records" feature

For more information on secure online electronic access to medical records, visit http://www.healthit.gov/ or watch this video.

New Feature Shows How You Compare

Enrolled participants can also now explore the many bar graphs and pie charts in the "How Did Others Respond?" section of their MyRegistry page to see how others responded to the Registry questions. For example, they can find out the percentage of participants who experienced similar symptoms, treatments, and outcomes.

Take this pie chart as an example: It shows responses to the question, "Did you receive treatment with magnesium sulfate during this pregnancy?" As you can see, 75 percent of respondents indicated yes, 20 percent answered no, and five percent either didn't know or didn't answer.

Preeclampsia Doubles Women's Stroke Risk

February 10, 2014

The estimated 7 million women in the United States today who experienced a hypertensive disorder of pregnancy should be aware of new guidelines for preventing stroke in women from the American Stroke Association and American Heart Association. We have known for many years that a history of preeclampsia during pregnancy puts women at greater risk for future high blood pressure, but continuing research shows that the impact may extend to stroke risk as well.

In the U.S., stroke is now more common in women than men, with more than half of the 795,000 strokes that occur each year happening to women. The disease is also more deadly in women, with about 60 percent of stroke deaths happening in female patients.

"Guidelines for the Prevention of Stroke in Women - A Statement for Healthcare Professionals" from the American Heart Association and American Stroke Association were issued last week. These first-time-ever guidelines, similar to a 2011 publication by the American Heart Association, declared preeclampsia as a significant risk factor for heart disease and stroke. This paper suggested preeclampsia survivors have double the risk of having a stroke and those who deBox1veloped preeclampsia before 32 weeks, a five-fold increased risk, over women with normal pregnancies.

The guidelines went even farther to recommend interventions to prevent preeclampsia, in the hopes  that improved pregnancy outcomes would lower a woman’s risk of stroke. Low dose aspirin and calcium were suggested. [see Box 1] In other research, both of these interventions get mixed reviews, although the former has now been included in the 2013 Hypertension in Pregnancy Guidelines issued by the American College of Obstetricians & Gynecologists. Other research studies on calcium have only found an effect in populations that are calcium-deficient, generally not a problem in the U.S.

Nonetheless, an important part of the conclusions were the recommended follow up actions (see Box 2) which include evaluation and treatment of risk factors as soon as six months after delivery. The ASA guidelines recommend that women with a history of preeclampsia be screened and treated for high Box2blood pressure, obesity, smoking and high cholesterol to reduce their risk for stroke.“Until recently, medical fields outside the obstetrical community were less familiar with complications in pregnancy and with the ongoing risks after pregnancy. The recent report represents a landmark in efforts to increase awareness of risks for brain injury among all providers well beyond the obstetrical community,” said Dr. Thomas Easterling, Medical Board Director for the Preeclampsia Foundation. Similar to other recently released guidelines, all healthcare providers are encouraged to fully appreciate the risks of brain injury to women with preeclampsia and to practice strategies to prevent them.  The most common themes in all the guidelines include:

  • Early identification of risk
  • Prevention of seizures (eclampsia)
  • Control of blood pressure
  • Delivery when the magnitude of maternal risk exceeds the interests of the fetus in-utero
  • Aggressive postpartum management of fluid status and hypertension
  • Surveillance and risk intervention among women affected by preeclampsia as they age

"As advocates for women's health and especially for greater awareness of preeclampsia, we applaud this expression of heightened concern and hope this will lead to much needed research into the cause of preeclampsia and novel treatments," said Eleni Tsigas, Executive Director of the Preeclampsia Foundation. "We are working with a small, but growing body of healthcare providers interested in improving long-term health outcomes for preeclampsia survivors."

Early Beta of The Preeclampsia Registry is demonstrated at SGI

Attendees at the Society of Gynecologic Investigation's Annual Meeting in Orlando on March 20-23 were treated to a "sneak peak" of The Preeclampsia Registry.  Although it is not expected to be publicly available until Summer 2013, investigators were called upon to review plans and provide feedback early in its development process.  Demonstrations were held at the Preeclampsia Foundation's exhibit booth.

April 2017 Newsletter

April 22, 2017

August 2016 Newsletter

August 16, 2016

A new survey! Understanding the patient journey

January 21, 2016

The Preeclampsia Registry launched a new survey to help us better understand the patient journey - your individual experiences, from diagnosis through management treatment and delivery. 
Log-in to the Registry to complete the Patient Journey Survey or finish your enrollment questionnaire! 

**Only those who completed their first enrollment questionnaire will be eligible to complete this survey. 

January 2016 Newsletter

January 12, 2016

You asked, we're answering: Is the MTHFR gene associated with preeclampsia?

January 07, 2016

The Preeclampsia Registry is committed to building a partnership between our participants and researchers. With this goal in mind, we're asking you to share any research ideas you may have --to do that, log in to preeclampsiaregistry.com and go to the Submit a Research Idea tab. We share these ideas with members of our Scientific Advisory Council and Medical Advisory Board. Keep your ideas coming and we'll follow up either directly or through an article such as this.Special thanks to Dr. James Robert, Co-chair of The Preeclampsia Registry's Scientific Advisory Council and member of the Preeclampsia Foundation's Medical Advisory Board, for his editorial assistance with this article.

Several genes in our bodies have been linked -- to varying degrees -- to our chance of developing preeclampsia.  A gene is a region of your DNA that holds the instruction manual for making proteins that are the building blocks of most of life's functions.  The MTHFR gene provides the instructions to make an enzyme called methylenetetrahydrofolate reductace (try saying that fast!).  This enzyme helps to process amino acids that are the building blocks of proteins.

Studies have shown that variations, or subtle differences, in the MTHFR gene are associated with increased risk for many common conditions including heart disease, stroke, high blood pressure, and preeclampsia,among several others. MTHFR helps metabolize folic acid that leads to the breakdown of an amino acid homocysteine. Homocysteine is increased with heart disease, stroke, high blood pressure, and preeclampsia. One variant of the gene for MTHFR is very common and makes a "weak enzyme"that doesn't work as well. It's thought that the weak enzyme leads to an increase in homocysteine, which explains why this gene variant is associated with cardiovascular disease and preeclampsia.

What does this have to do with preeclampsia?

Homocysteine is increased in preeclampsia and MTHFR mutations are more common in preeclampsia. However, it appears that the weak enzyme, if supplied with more folic acid (the amount available in prenatal vitamins), will work well enough to prevent higher homocysteine in normal pregnant women. Higher homocysteine is still present in women with preeclampsia but is not related to whether the woman has the abnormal gene or not.

What do we need to learn?

Despite the ability of folic acid to protect against high homocysteine, which is thought to be why the MTHFR gene variant is associated with preeclampsia, reports of an association of the abnormal gene and preeclampsia persist. This may be related to the vulnerable population not taking folic acid or there may be another effect of the abnormal gene.

What should you do with this information?

There are a few things to consider before running out and getting tested for variations in the MTHFR gene. First, there is the very real possibility that folic acid can reduce the risk. Second, the effect of MTHFR to increase the risk of preeclampsia is small. In analyses of available studies, the increased risk is 20 percent to 30 percent (compared to 300 percent with obesity). Talk to your doctor about the benefits and disadvantages of genetic testing. Discuss what you would do with the results and if they could potentially change any current treatment plans or affect future decisions. And be sure to take prenatal vitamins with at least 400 micrograms of folic acid if you are pregnant or planning to become pregnant.

Genetic testing can be costly and may not be covered by your insurance. Contact genetics labs to obtain their rates and check with your insurance to make sure you know ahead of time about any out-of-pocket costs.

Finally, every year scientists are learning and developing more efficient ways to study genetics and develop clinical tests. The Preeclampsia Foundation is dedicated to being at the forefront of preeclampsia research to bring you the most up-to-date information on scientific advances and breakthroughs.


1.  Ubeda N, Reyes L, Gonzalez-Medina A, Alonso-Aperte E and Varela-Moreiras G. Physiologic changes in homocysteine metabolism in pregnancy: A longitudinal study in Spain. Nutrition. 2011;27:925-930.

2.  Powers RW, Dunbar MS, Gallaher MJ and Roberts JM. The 677 C-T methylenetetrahydrofolate reductase mutation does not predict increased maternal homocysteine during pregnancy.Obstetrics & Gynecology. 2003;101:762-6.

3.  Yang BY, Fan SJ, Zhi XY, Li YF, Liu YY, Wang D, He M, Hou YY, Zheng QM and Sun GF. Associations of MTHFR Gene Polymorphisms with Hypertension and Hypertension in Pregnancy: A Meta-Analysis from 114 Studies with 15411 Cases and 21970 Controls. PlosOne. 2014;9.

4.   Wang XM, Wu HY and Qiu XJ.Methylenetetrahydrofolate Reductase (MTHFR) Gene C677T Polymorphism and Risk of Preeclampsia: An Updated Meta-analysis Based on 51 Studies. ArchMed Res. 2013;44:159-168.

Grant awarded for TPR research

August 26, 2015
We're please to announce that the Preeclampsia Foundation received an additional grant for $22,500 from the Community Foundation for Brevard to study the genetics of preeclampsia and its association with cardiovascular disease, both of which dramatically impact the health of women and children.

This grant will extend research funded in 2014 by the Community Foundation to study preeclampsia and its impact on the long-term health of mothers and infants through The Preeclampsia Registry™.

The Community Foundation's initial grant of $30,000 was used to expand The Preeclampsia Registry to include a biobank of DNA samples -- we've collected more than 500 DNA samples since, which is quite an accomplishment!

Click here to Get All The Details!



(From left) Preeclampsia Foundation Executive Director Eleni Tsigas gratefully accepts a $22,500 medical research grant award from theCommunity Foundation for Brevard's Lisa Davidson, Grants & Programs Manager, and Community Foundation for Brevard Board Members Robert Naberhaus III and Juliana Kreul.

The Preeclampsia Registry tops 2,000; what this means for research

August 10, 2015

The Preeclampsia Registry™ has enrolled more than 2,000 participants since its launch in September 2013. Sponsored by the Preeclampsia Foundation, The Preeclampsia Registry is the first of its kind to focus solely on hypertensive disorders of pregnancy, bringing together survivors, family members, and researchers from all over the world. Its purpose is to develop a comprehensive picture of preeclampsia to help discover preventions and treatments, including ones that will reduce the disorder’s long-term health impact.

As the online patient and family database for those affected by preeclampsia and related hypertensive disorders of pregnancy, The Preeclampsia Registry has been designed to aid and accelerate preeclampsia research. Women who have experienced preeclampsia and related disorders may enroll and participate, along with their family members and even friends who were not affected to serve as research “controls”.

The Preeclampsia Registry captures self-reported and clinical information, and family and pregnancy history. We began collecting biological data earlier this year and are completing our current project of sample collection for the registry’s biobank. So far, we have collected more than 500 samples from preeclampsia survivors and their sisters, partners, and children that will help us study preeclampsia’s connection to cardiovascular disease.

Presently, there are six ongoing research initiatives in different phases of completion. One is looking at the genetics of symptoms that women experience, or don't experience. Another will analyze the 'patient journey' from illness to diagnosis to management.

Each participant’s story, medical and pregnancy history, and ongoing health reporting can help scientists unravel the pieces of the preeclampsia puzzle. By allowing us to review your medical records pertaining to preeclampsia, we are able to verify the information you are entering into the registry. This is very important to some research studies. We encourage participants to provide their full medical records and are here to help them make the request to their doctors and/or hospitals. Overseen by an Institutional Review Board, the registry ensures participants’ privacy and rights in medical research at all times.

Participants can view charts and graphs in the "How Did Others Respond?" section on their “My Registry” page and may find data interesting to them. They can find out if other participants experienced the same symptoms or treatments. Because confidentiality is our top priority, no names or identifying information appears on the reports and statistics are displayed as percentages. Participants also have the ability to pose their own research questions in the “My Registry” section of this website.

According to Alina Brewer, Research Coordinator for The Preeclampsia Registry, “There’s a tremendous need for cultural diversity in the registry. Studies are most accurate when they can mirror the population affected by a disease, and increasing our racial and ethnic representation will help investigators gain a better understanding of the characteristics of this disease and validate The Preeclampsia Registry as a valuable resource.”

Participants help create a significant resource for researchers to gather data, start new studies, and make discoveries that will positively affect health outcomes for mothers and babies for many generations to come.

Our goal is to enroll more than 10,000 participants and achieve closer representation of all those affected by hypertension during pregnancy. For more information or to enroll, go to www.preeclampsiaregistry.org or contact Alina Brewer at registry@preeclampsia.org.

What's a registry?

August 09, 2015

The Preeclampsia Foundation is not a university or research hospital, and like most other patient advocacy organizations, it does not own a state-of-the-art laboratory in which to conduct complicated experiments. However, the Preeclampsia Foundation is a large community of survivors, families, and friends joined in the search for an end to this devastating disorder. With so many questions and theories as to the cause and management of preeclampsia, a patient-driven registry (such as The Preeclampsia Registry) provides survivors and their families an opportunity to play a key role in preeclampsia research.

There are different types of registries that can serve different purposes, but ultimately, a patient registry is a platform to collect information from people who share the same condition and/or have similar experiences. In recent years, patient advocacy and rare disease organizations have become critical contributors to research through patient-driven registries. Often faced with financial barriers, these organizations have sought the most effective avenues to conduct research and create the most impact. Furthermore, these organizations consist of communities of volunteers who are enthusiastic to move research forward, and looking for ways to help, can create a resource unmatched in the clinical research arena.

Participating in a registry will mean answering some questions about your experience with the condition (from a few to over a hundred). Today many registries collect this information over the Internet; however, others may collect this information at a doctor’s office or by phone with a research assistant. Some registries may ask you to provide a copy of your medical records (or permission to release them), and you may also be asked to periodically update your health information.

You may be wondering where this information goes and how it helps to accelerate research. Some researchers just need information (or data) to test their theories, while others also need research participants to enroll in clinical trials. Registries can expedite the research process by providing researchers with valuable information and participants that would otherwise have been more difficult and time consuming to achieve.

The Preeclampsia Registry, for example, provides approved researchers with access to “de-identified” health information – information that does not contain participant names or contact information. This helps researchers to find patterns among preeclampsia survivors that can lead to findings and further studies. Researchers may also pose new questions to a large and willing audience, a strategy that usually takes much longer without a registry.

The Preeclampsia Registry also gives its participants the option of learning about other research studies of which they may qualify and provides them with the means of connecting with these researchers.

Most importantly, patient registries unite the patient voice with clinical research. Patients have questions, theories, and interests that are often different from investigators conducting formal research. By engaging patients in the research process, as we can through patient registries, the chances for discovery and improvement are an even greater possibility.

For more information about patient registries, visit http://www.nih.gov/health/clinicaltrials/registries.htm        

To learn more about The Preeclampsia Registry, go to www.preeclampsiaregistry.org

Get my health data!

July 02, 2015

July 4th has been declared "Data Independence Day" to promote the Get My Health Data campaign with aims to "remove barriers, enhance demand, and improve patient access to electronic health data"

The Preeclampsia Registry becomes even more enriched with information when participants are able to provide a copy of their medical records.  If you have your medical records on hand and are willing to share them with the Registry, simply log-in to your Registry account and select "Upload Medical Records" from your MyRegistry page.  Once your records are uploaded to the Registry you can always return to view and access them.  We are also willing to help you to get a copy of your records for you!  Just contact our Research Coordinator at registry@preeclampsia.org for more information.

For more information about the Get My Health Data campaign visit our News page or GetMyHealthData.org

Have You Had a New Pregnancy?

April 08, 2014

If you've already finished your questionnaire and have since been pregnant, we want to know about it!  You can now add a new pregnancy from your MyRegistry page by selecting "Give an Update" then "Add a New Pregnancy" from the options provided.

How Did Other Participants Respond?

April 08, 2014

Are you curious to know how other participants responded to the questions in The Preeclampsia Registry? Feel free to explore the bar graphs and pie charts in the "How Did Others Respond?" section of your MyRegistry page.  Find out, for example, if other participants experienced the same symptoms or treatments that you did.  As your confidentiality is of utmost priority, no names or identifying information is shown on the reports and all statistics are displayed as percentages.

If you have other reports you would be interested in viewing, send us an email at registry@preeclampsia.org

Already Enrolled? Wondering What to Do Next? Check out "My Registry"

September 08, 2013

After logging in to The Preeclampsia Registry, click on the “My Registry” tab and use these additional features to keep us updated on your health and your child’s health, upload and attach your medical records and lab results, and even submit your own research questions. This is a “living database” so we’ll be using this section to pose new questions for you to answer, as well as to hear from you.