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Several years ago, Dr. Jun “Jim” Zhang, a senior investigator at the National Institute of Child Health and Human Development approached the Preeclampsia Foundation about working together on an epidemiological research study. Here was the study’s rationale:

“Preeclampsia is a syndrome of hypertension accompanied by proteinuria. It is a major pregnancy complication, associated with premature delivery, fetal growth restriction, abruptio placentae, and fetal death, as well as maternal morbidity and mortality. Although preeclampsia has been recognized for centuries, the etiology of this disorder remains unknown. Familial clustering of preeclampsia has long been identified, leading to the concept of a genetic basis for this syndrome. We propose a familial genetic study of preeclampsia. As such a study is often difficult to do, we plan to conduct a pilot study to test the feasibility, logistics and examine frequency of genetic polymorphism of certain genes in the target population.”

A total of 60 women who had preeclampsia during their first pregnancy were identified through the Preeclampsia Foundation. Women who had chronic hypertension or diabetes prior to the first pregnancy were excluded. We also tried to enroll their family members in the study. All subjects were asked to complete a self-administered questionnaire and collect mouth wash samples, in order to collect the buccal cells from which DNA was extracted. Women who reported having hypertension during pregnancy were also asked to sign a medical record release form, and a copy of their medical record was obtained to confirm the diagnosis of preeclampsia.

Forty-six women returned the questionnaires and samples, resulting in a 77% participation rate – a very high response for research studies. The actual enrollment rates for the biological mother, father, mother-in-law, and father-in-law ranged between 61% and 26%; and the actual enrollment rates for full sisters, brothers-in-law, full brothers and sisters-in-law ranged between 23% and 36%.

“Thus,” concluded the abstract, “conducting a familial genetic epidemiologic study with self-administering questionnaires, mouthwash and buccal swabs is feasible. However, strategies for increasing participation rates among family members are warranted.”

We concluded the collection process in early 2006, and the resulting abstract was submitted to the International Society for Studies on Hypertension in Pregnancy and the Society for Pediatric and Perinatal Epidemiology annual meetings. Our Study Managers, Anne Garrett and Carrie Barrion, presented the poster at the latter meeting.

 

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On November 20-22, 2007, a meeting was held in Vancouver, British Columbia to discuss The Preeclampsia Integrated Estimate of Risk Study (PIERS) which was lead by Dr. Peter von Dadelszen. Besides being the lead investigator for the study, Dr. von Dadelszen is also a member of the Preeclampsia Foundation’s prestigious Medical Advisory Board, President of the North American Society for the Study of Hypertension in Pregnancy (NASSHP), and the President of ERIPED (Equipede Recherché Interdisciplinaire sur la Pre-Eclamspie et ses Determinants), Canada’s preeclampsia research alliance.

The goal of the 41-month PIERS study was to create a rigorous standard care protocol for the diagnosis and intervention of preeclampsia and the purpose of the meeting was to move to the next level of the PIERS study. After prospective gathering of data for seven years, and publishing the findings, the next step was to strategize about what had been learned and figure out how to get hospital administrators to adopt the findings as the standard protocol for care.

Representing the Preeclampsia Foundation in non-scientific roles during the two-day PIERS meeting were Executive Director J. Thomas Viall and Fiona Morrow, Forum Administrator and preeclampsia survivor. Morrow was involved in the PIERS study and presented the human component behind the graphs and charts by sharing her story and answering questions. Viall could tell by the eagerness of the interaction that she really got the audience’s attention and described her speech as “emotive and clear.” He said their entire presentation, “…was very powerful. Many of the scientists and medical professionals had tears in their eyes.” They were “just stricken.” Viall credits von Dadelszen with presenting and keeping the human component “front and center” to keep the researchers focused on the importance of the study. “There are moms losing babies, and husbands losing wives,” said Mr. Viall.

The researchers looked at past practice and records of how 400 women were evaluated for, and diagnosed with preeclampsia, as well as the recommendations that were made for intervention. The researchers compiled a snapshot of how, in these 400 cases, monitoring was done; what diagnostic protocols were used, and what interventions were taken. They matched those data to the outcomes of each of the women and found that five percent of the women had negative outcomes (loss of life, stroke, seizures, organ failure, etc). The next step was to develop a standard protocol for all possible cases of preeclampsia, because one cannot predict the outcomes.

Approximately 300 women participated in this phase of the initiative. When the standard protocol of care, which was very stringent, was used for these women, it produced a significant decrease in negative outcomes; which dropped from five percent to approximately seven-tenths of one percent. Viall pointed out, that unfortunately, there was no shift in neonatal outcomes with the standard care protocol. Viall thought this study might present a major opportunity for the Preeclampsia Foundation, in that the Foundation could seek grants to do similar studies in the U.S., based on the PIERS findings. The goal would be to change diagnostic and intervention protocols in the States, though Viall acknowledged that differences in the Canadian and U.S. health care systems might present certain challenges. At a minimum, he said, “the Preeclampsia Foundation could be a clarion voice for the patient by promoting its view of best practices.” We must continue to be the honest broker with no agenda other than minimizing negative outcomes…that will help to save lives.”

Acknowledging that preeclampsia is an even bigger problem in the developing world, the meeting also focused on the development of condensed recommendations for diagnosis and intervention in less developed countries. ”I had the opportunity to meet and speak to the Coordinator of Maternal and Perinatal Health activities within the Reproductive Health Division of the World Health Organization. He was quite impressed with our work and I do believe we will stay in touch and consider ways in which we can collaborate in the future,” said Viall. While delving into the underdeveloped world is “not necessarily a front line mission-issue for the Preeclampsia Foundation, the Board of Directors has begun to look at ways we might begin developing materials and guidelines to have an impact beyond North America,” said Viall.

 

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“I have learned through bitter experience this one supreme lesson: to conserve my anger. And as heat conserved is transmitted into energy, even so our anger controlled, can be transmitted into a power that can move the world.” The quote above is from Mohandas Gandhi. I think it captures a very real component of human nature and gives us pause to examine our own behaviors and actions. Tragedy and sadness of any sort can fuel a torrent of emotions—among them anger.

Anger is a reasonable response for a woman who has had preeclampsia and perhaps lost a child or suffered debilitating damage to her body. Anger seems most rational for the husband who finds he is a single parent because of preeclampsia. Anger is almost logical for parents of a premature baby who may face a lifetime of physical and developmental challenges because of preeclampsia.

I get angry too when I realize that ignorance of the symptoms of preeclampsia—simple awareness—might be paid for with a woman’s life or that of her baby. I get really angry when I realize that preeclampsia, when we consider its scope of impact, is one of the most poorly funded areas of research at the National Institutes of Health (NIH).

To be fair, it’s not unreasonable for medical professionals to also well up with anger at the helplessness they sometimes feel when they can assess the problem but have no effective intervention to save mother and/or child. Few things are as frustrating and anxiety producing as the sense of being powerless.

Finally, it’s not at all unreasonable for all of us to seethe over the lack of societal awareness and understanding of preeclampsia. We know that approximately one in 12 pregnancies will result in a diagnosis of preeclampsia and that 25% of those cases will be severe. With 4,300,000 births in the U.S. in 2006—that equates to a diagnosis of severe preeclampsia every 6 minutes of every day of the year. It’s easy to be angry.

The challenge (as we all know) is to not let the anger consume us. For me, this is where Gandhi’s quote becomes useful. If I can use my anger’s energy to address a root cause of that anger—that is anger well channeled.

Over the past few months I’ve had the privilege of getting out from behind my desk to meet many preeclampsia survivors, families, members, supporters, and researchers around North America. To be sure, I cannot presume to know the inner thoughts of all these good people; I don’t know where the anger lies, how deep it may run, or if it’s even there at all. However, I have seen people “well channeling” their energies and I am hazarding a guess that some of it is out of frustration and anger. And my message today is a simple one…that’s OK.

You have every right to be mad—real mad—and as a result, that energy (well channeled) is fueling research as well as public awareness.

That anger has become an empowering, liberating force. None of us know with any certainty if we will be the one to, as Gandhi’s quote suggests, “move the world.” I dare say that Rosa Parks never thought of herself as an American icon—but in her quiet and dignified way—she changed America for the better. She moved the world and I suspect she used a little “anger well channeled.”

Our mission is vitally important and we must use every tool we can to succeed. It’s easy to be angry, but it takes work to harness and “channel” that potential energy. It is that very commitment to hard work and heavy lifting that makes the Preeclampsia Foundation—and all its supporters—a “channeling” force for good.

 

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Continuing Medical Education (CME) courses are a key way for medical profes­sionals to upgrade their skills, master the latest research and qualify for promotions and membership in industry organizations. Last year the Preeclampsia Foundation and the University of Minnesota’s Deborah E. Powell Center for Women’s Health joined together to create the first-ever online CME course devoted to preeclampsia prediction, management and outcomes. Now that the first offering of the course is complete, feedback from participants suggests that it could play an important role in improving awareness, diagnosis and treatment.

The CME was divided into three modules: one devoted to diagnosis, a second with the latest treatment and management informa­tion, and the third focusing on heart disease prevention in preeclampsia survivors. Physi­cians Dr. Thomas Easterling, Dr. Michael Katz and Dr. Tanya Melnik conducted the lectures, which were accompanied by online PowerPoint presentations.

When participants were asked to rate the CME, “the evaluations showed overwhelm­ingly excellent scores,” says Becky Gams, an RN with the University of Minnesota who ran the CME. Seventy-four percent rated the first module as “excellent.” Even more im­pressive were the comments that participants made when asked what changes they would make to their work as a result of the course. “[I will] monitor my pregnant patients more closely and have a higher suspicion of preec­lampsia,” wrote one student. Another said, “Having a better understanding of the pa­thology and possible predictors will heighten my awareness about potential complications during the preconception and ante-natal time period.” Several wrote that they would encourage patients to manage their weight or hypertension before conception.

J. Thomas Viall, Executive Director of the Preeclampsia Foundation, says it is criti­cal that the Preeclampsia Foundation offer further CME credits through its website. “It reinforces our credibility with both the pro­fessional and patient communities,” he says. “The challenge is to do it in a way that is cost effective as well as compelling so as to drive traffic.” Producing the material, administer­ing the CME certification and hosting the website is expensive, and the existing course was made possible through a $10,000 grant from Black River Asset Management. Vicki Nolan, the sister of Preeclampsia Foundation operations director Jamie Nolan, works for Black River and applied for the grant. There is also pressure to improve production values to compete with more lavish CME courses designed by for-profit companies. At the moment, the course is available online for in­formation purposes, but not for credit. “We are currently in consultation with our Medi­cal Advisory Board to develop new CME and professional education opportunities and hope to have a new set of courses available by the end of the year,” says Mr. Viall.

 

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<p>The Preeclampsia Foundation recently “signed on” to a letter to Congress that was gener­ated by the Ad Hoc Group for Medical Research. You may know that we are members of “Friends of NIH (National Institute of Health)” and it is through that association we are able to make our voice heard in such matters. Make no mistake about it, we are friends of NIH . . . but as most of us know, even the best of friends can have disagreements. However, before I go there, let’s address the areas in which the Preeclampsia Foundation strongly supports the NIH.</p>
<p>These are clearly tough economic times, and it seems there is a “bail out” or “re­covery package” (depending on whom you are talking to) for almost everyone, and we want to make sure that NIH is not left in the cold. Accordingly, we have supported the recommendation that an additional $1.9 billion be allocated for NIH in the current economic packages that are being debated in Congress. Now, before you get apoplectic over the Foundation advocating what some might describe as irresponsible spending increases . . . consider the follow­ing (according to the Ad Hoc Group on Medical Research):</p>
<p>• NIH has been underfunded (i.e., below the rate of inflation) for the last six years, causing the real dollar value of its grants to drop.</p>
<p>• This funding could support an additional 5,000 grants that are awarded through its competitive system (i.e., only the best get funded).</p>
<p>• This one boggled my mind – and I quote from the letter to Congress, According to a study released in June 2008 by Families USA, on average, in fiscal year 2007, every dollar of NIH funding generated more than twice as much in state economic output. This means an overall investment of $22.846 billion from NIH generated a total of $50.537 billion in new state business activity in the form of increased output of goods and services. This same study revealed that in FY 2007 NIH grants and contracts created and supported more than 350,000 jobs that generated wages in excess of $18 billion in the 50 states. The average wage associated with the jobs created was $52,000.</p>
<p>• Lastly, I learned from the “sign-on” letter that, since 2003, NIH has lost about 14% of its purchasing power when measured against inflation in the biomedical arena</p>
<p>So, not only is NIH the epicenter of medi­cal research in the country, it is an economic engine that generates good jobs (with the positive ripple effect that has in local com­munities). It strikes this writer as just plain good sense that we should be supporting this allocation request. It’s an investment.</p>

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Say “matrix” and visions of a kick-boxing, black-clad Keanu Reeves may come to mind. No, this is not a movie review.

Every day, a small army of Harvard Medical School researchers reports to The Life Sci­ences Building in Boston’s Longwood Medi­cal Area. It’s new, ultra high-tech. It towers over its neighboring hospitals and research facilities and, with its clean lines, giant glass panels and sweeping marble stairway, would be a set designer’s dream for another sequel to “The Matrix”. The men and women who spend so much of their lives in this futuristic workplace are pulmonologists, oncologists, nephrologists, neurologists; they are natives of France, Norway, Sweden, Finland, India, China, Japan, Turkey, and the U.S. They study and work under the leadership of Dr. Raghu Kalluri, Chief of the Division of Matrix Biology at Beth Israel Deaconess Medical Center.

Composed of proteins and found through­out the body, the matrix serves as a platform for cells. Kalluri says just ten years ago, scien­tists believed that a cell contained all the in­formation it needed to function. Researchers have since discovered that the extracellular matrix actually tells the cells how to behave. After countless division, cells become liver cells, kidney cells, brain cells.all kinds of cells. Kalluri says the matrix supporting kidney cells, for example, tells those cells to “behave like a kidney”. Transfer them to a matrix in the brain and they’re no longer act­ing like kidney cells, but rather assuming the function of brain cells. Kalluri says as many as 50 different human diseases can be traced to defects in proteins outside the cell, which would explain in part, why the matrix has become a field of study in itself. And matrix biology has served as a powerful attraction for these graduate students and medical professionals from a range of disciplines.

New Jersey native, Scott Potenta, whose research paper had just been accepted the day we spoke, says he’s always been inter­ested in matrix proteins and their effect on cell behavior. He is studying the way blood vessels react in diseases such as cancer. Valerie LeBleu, a native of France and the first Har­vard graduate student to work at the Matrix Biology Lab, is trying to find alternatives to dialysis for treatment of Alport Syndrome, a genetic kidney disease that affects 1 in 5,000 people. LeBleu and Potenta say they appreci­ate the richness of the laboratory, which is obvious in the diversity of the workforce and the wide representation of specialties, all of which foster the sharing of knowledge and experience. Formal discussions at stations in the main laboratory, as well as informal con­versation over coffee in the break room can and do give way to new ideas, and more than a few “aha!” moments. Both of these young researchers and their colleagues made it clear to this reporter, it’s a privilege to work in this cutting-edge environment.

Their days are spent comparing graphs on a split computer screen or peering into micro­scopes deciphering cells on a slide, manipu­lating organic solutions, each with their own requirements for survival: simple refrigera­tion or having to be gingerly lowered into giant cylinders, filled with dry ice.

In the next row of lab stations, is Dr Keizo Kanasaki, a Japanese native and research fel­low in medicine. Kanasaki collaborated with Kalluri on a paper reported in the May 11, 2008 online “Nature”. They theorize that preeclampsia is actually linked to an absence of 2-ME, and that administering that pro­tein to women with the disease would be a viable treatment. Because this is a women’s disease, you might think that Kanasaki is an obstetrician. He is a nephrologist; he studies the kidney. Which brings us back to the common ground for all of these dedicated researchers…the matrix. Discoveries within that mass of protein, the scaffolding for cells throughout the human body, could yield the keys to unlocking the mystery of pre-eclampsia and, hopefully, lead to prevention.

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Blood pressure cuffs, urine dipsticks, and the scale: for decades, these simple tools have aided health care providers in the detection of preeclampsia. As a woman's pregnancy progresses, her prenatal visits come closer together, so that her weight gain, urine, and blood pressure readings can be monitored for signs of the disorder. However, this system isn't perfect. While preeclampsia most frequently occurs at term, it can sometimes strike much earlier. The disorder can sometimes progress rapidly between appointments, or the warning signs can be too subtle to trigger alarm.

But soon, clinicians may have another method for detecting preeclampsia: a reliable screening test that can spot changes in the bloodstream relatively early in pregnancy, warning healthcare providers when preeclampsia may occur before term.

In the past eight years, a substantial amount of preeclampsia research has focused on proteins found in blood known as soluble factors. The chain of events that will eventually lead to preeclampsia seems to begin quite early in pregnancy -- in fact, during the implantation of the placenta. Something disrupts the implantation process. As pregnancy progresses, the placenta intermittently runs short of oxygen, and the levels of many of these soluble factors start to vary from normal.

One of these proteins raises maternal blood pressure and inhibits Placental Growth Factor, or PlGF. Another protein, called soluble endoglin (sEng), also affects blood vessel function and is particularly elevated in HELLP syndrome. The hope is that by measuring levels of PlGF and sEng, the ratio between them, and the rate at which they are changing, clinicians can detect preeclampsia much sooner, well before symptoms appear. At that point, monitoring and management of that pregnancy would become more aggressive, in expectation that she will develop the symptoms of the disease as pregnancy continues.

Several companies in the United States and abroad have invested in these and other biomarkers to develop diagnostic or screening tests.

Miraculins Inc., a company that develops diagnostic tests from academic research and further adapts them for clinical use, first acquired the rights to an ensemble of 35 soluble factors, including endoglin, from Mount Sinai hospital. On January 7, they announced a new partnership with Inverness Medical Innovations Inc., a company that manufactures and markets such tests worldwide. "It was just a natural fit for us," said Ferran Prat, Vice President of Oncology and Women's Health for Inverness. "We're [already] launching a PlGF test in Europe, where the regulatory environment is different."


Christopher Moreau, President and CEO of Miraculins, plans to launch the first US ELIZA-based test through a few labs within the year, under a FDA exemption called an ASR, to build data while progressing towards full FDA approval. One way to apply the test would be to take a blood draw around the 24th week of pregnancy and compare it with first trimester bloodwork. This could detect changes that warn that a woman is likely to develop early preeclampsia, before 35 weeks gestation. The test could likely also be used as an instant diagnostic confirmation that a woman less than 35 weeks pregnant is suffering from preeclampsia and needs immediate treatment. The test itself only requires basic infrastructure and when the costs of the phlebotomist and shipping, if needed, are factored in, the total price will likely be $100- $200.

Preliminary serum and plasma studies indicate that the test will have very high sensitivity and specificity, which means it will capture essentially all of the women who will go on to develop early preeclampsia, plus a small number of women who will be monitored more closely but won't go on to develop the disease before 35 weeks gestation.

And there's hope for a first trimester screening test within a few years. "We're delighted to be able to move forward with developing this test," said Moreau. "Maternal and child health has been terribly neglected, and the opportunity to do something positive for women in this position, and save lives, is just tremendous."

 

 

 

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Posted on in Research

Vitamin D and Microchimerisms:

Could the sun really have something to do with preeclampsia?
"Maternal vitamin D deficiency may be an independent risk factor for preeclampsia. Vitamin D supplementation in early pregnancy should be explored for preventing preeclampsia and promoting neonatal well-being," reads a paper published in the Journal of Clinical Endocrinology & Metabolism in 2007. Although some of us who had our babies in, say, Portland, Oregon, where the sun rarely shines, would love to claim Vitamin D deficiency, other preeclampsia survivors sweltered under the Arizona or California sun. If you think this might be a possible therapy to explore, talk to your health care professional and check out the discussions in our Community Forum on this topic.

Micro-what?
Researchers have found that women with preeclampsia, which causes high blood pressure in late pregnancy and can kill both mother and child, had five times the microchimerism of healthy women. Fetal cells, it turned out, are complex characters. A chimera is an organism with DNA from different sources, which of course is what fetal cells are, since their DNA derives from both mother and father. Read the article, The Yin-Yang Factor, published in Stanford Medicine Magazine, if you weren't already convinced that preeclampsia is a really complex disease.

Patent issued for preeclampsia diagnostic test
A press release from Miraculins announced that the United States Patent and Trademark Office has issued US Patent 7,754,495 entitled "Methods for Early Diagnosing of an Increased Risk of Preeclampsia." Previous issues of Expectations discussed this company's development of a diagnostic marker for preeclampsia.

 

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Posted on in Research

Last month, a team from the University of Alberta reported in the journal Hypertension on a method to determine that a woman is at high risk of developing preeclampsia. While this method may or may not be developed into a screening test in the future, it confirmed that changes in the metabolism and the vasculature of women who go on to develop preeclampsia can be detected at 15 weeks gestation.

Two Preeclampsia Foundation members were involved in media coverage on the topic and we are very grateful to them for bringing a human face to the stories about preeclampsia. Because of the press conference and media efforts of the University, a lot of lay press picked up the story and we are fortunate that the Foundation was mentioned in several of those stories. The research findings while seemingly exciting to a lay public are far from commercial realization and would need more validation for most governmental oversight bodies (e.g., FDA). Our message of "cautious optimism" is a responsible middle ground at this early juncture. Read more here.

Also, a new study into changes in maternal weight between pregnancies was published in the journal Obstetrics and Gynecology by a team from the University of St. Louis Medical Center. It confirmed that women who lose weight after a preeclamptic pregnancy have a lower risk of preeclampsia in later pregnancies than women who maintain their weight or who gain weight. Losing weight may change the uterine environment and help encourage normal placental development. A link to the abstract and discussion among forum participants may be found here.

The National Institutes of Health announced that research shows taking vitamin C and E supplements early in pregnancy does not reduce the risk for hypertensive disorders and other complications during pregnancy.

An Irish study to be published in an upcoming issue of Hypertension shows that metabolites found in women's blood early in pregnancy may be able to serve as accurate predictors of preeclampsia. This is a significant breakthrough, as biomarkers for preeclampsia have not previously been very precise. Further studies on the topic are planned.

 

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111th Congress, Second Session

Congress has adjourned until after the November 2nd election. For the next few weeks, members of Congress will be focused, almost exclusively, on campaigning for re-election. Congress is expected to return in the third week of November for a “lame duck” session - a post-election legislative session during which members convene to wrap up unfinished business before the end of the calendar year. Because these sessions include those members who failed to win reelection and some who are retiring, lame duck sessions are not usually very productive and can be very volatile and difficult to predict.

While the exact agenda for the upcoming lame duck session is still unclear, measures that will likely be taken up include a food safety bill and certain tax provisions. In addition, Congress must address how to fund the federal government for the next fiscal year as they have yet to finalize all of the various bills that fund current government services and programs, including funding for the Centers for Disease Control and Prevention and the National Institutes of Health.

Continue to check back regularly for feedback and insight on issues of interest before and after the election, during the congressional lame duck session and as the federal agencies continue to conduct business.

 

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Raising Awareness of Hypertension (H. Res. 1656) - Status: Introduced. Sponsor: Rep. Alcee Hastings (D-FL). Aims to increase awareness of hypertension and reduce its prevalence in the United States through education, research, community programs, culturally competent strategies, and efforts to reduce the excess salt content in foods. The resolution notes that women with high blood pressure are more likely to experience certain complications during pregnancy, including kidney and other organ damage, low birth weight, early delivery, stillbirth, and maternal mortality.

http://frwebgate.access.gpo.gov/cgibin/getdoc.cgi?dbname=111_cong_bills&ocid=f:hr1656ih.txt.pdf

 

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PREEMIE Act (Prematurity Research Expansion and Education for Mothers who Deliver Infants Early Act) (S. 3906) - Status: Introduced. Sponsors: Sens. Lamar Alexander (R-TN) and Christopher Dodd (D-CT). Reauthorizes programs Congress established in 2006 to address premature birth. Calls for expanding work conducted at the National Institutes of Health, Centers for Disease Control and Prevention, and the Health Resources and Services Administration to conduct research and improve access to prenatal care. Among its provisions, the legislation creates trans-disciplinary research centers, will result in additional epidemiological studies, and supports telemedicine services to improve access to care. Expands and supports federal activities conducted under the 2006 statute, which would otherwise expire at the end of fiscal year 2011 (September 30, 2011). (Text of legislation is forthcoming)

 

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On October 18, the Iowa Section of the Association of Women's Health, Obstetric and Neonatal Nurses hosted Preeclampsia: A Team Approach to help provide healthcare providers with a greater understanding of the disease. More than 70 participants enjoyed the viewing of the 2009 Chairman's Hope Award for Outstanding Service video highlighting John and Brenda Warner, opening comments by Sue Gehlsen , Executive Director of Women's Services at Iowa Health, presentations by Joseph Hwang, MD, FACOG and George Lederhaas, MD on hypertension in pregnancy and anesthesia issues in preeclampsia and HELLP syndrome, and dinner discussion with Christine Streets, Mrs. Iowa United States, who shared her own HELLP syndrome story.

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Members of Congress will return the third week of November for an abbreviated lame duck session - a post-election legislative session during which members convene to wrap up unfinished business before the end of the calendar year. The agenda will be focused on items necessary for consideration before Congress officially adjourns, including federal government spending allocations (federal appropriations) for all government agencies, departments and programs – including the National Institutes of Health and Centers for Disease Control and Prevention – two agencies of importance to preeclampsia research and prevention efforts. The start of the new Congressional session will also bring a number of changes that may potentially impact preeclampsia-related government policy:

Women in the 112th (2011-2012) Congress

There are 76 female legislators serving in the House of Representatives in the current Congress. Next January, when we begin the new Congress, the number of women legislators in the House will drop to 73 (50-D, 23-R).

There are currently 17 female Senators in the current Congress, seven of whom ran for reelection this year. Of the seven, five have secured a place in the 112th Congress. Senator Lisa Murkowski (R-AK) is awaiting the results of the final vote tally. Should she be reelected, the number of female Senators will remain at 17.

Maternal and Child Health Issues

Starting January 1, 2011, the new Congress will include three additional nurses and eight additional doctors. New members of Congress with health care backgrounds represent the following professions: nursing, heart surgeons, anesthesiologists, general surgeons, osteopathic physicians, family practitioners, ophthalmologists and optometrists. In total, there will be 19 members serving in the House of Representatives and five Senators who have health care backgrounds.

House
In the U.S. House of Representatives, many of the members most active in sponsoring maternal health-related bills will return to Capitol Hill for the 112th Congress. Rep. Eliot Engel (D-NY) and Rep. Diana DeGette (D-CO), who introduced the Gestational Diabetes (GEDI) Act (H.R. 5354) both won reelection. Similarly, Rep. Lois Capps (D-CA), the sponsor of the Improvements in Global Maternal and newborn health Outcomes while Maximizing Successes (MOMS) Act (H.R. 5268); Steve Cohen (D-TN), the sponsor of the Nationally Enhancing the Wellbeing of Babies through Outreach and Research Now (NEWBORN) Act (H.R. 3470); and Rep. Lucille Roybal-Allard (D-CA), the sponsor of the Maximizing Optimal Maternity Services Act (H.R. 5807), won their respective reelection bids. These bills will need to be reintroduced in the new Congress to be considered.

Senate
Lamar Alexander (R-TN), sponsor of the Prematurity Research Expansion and Education for Mothers who Deliver Infants Early (PREEMIE) act (S. 3906) was not up for reelection during this election cycle and will return to Congress. His lead co-sponsor Christopher Dodd (D-CT) retired from Congress, so Senator Alexander will be working to identify another lead Democratic champion for his legislation, which reauthorizes several programs of importance across federal health agencies.

 

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Posted on in Research

Several major disorders that occur during pregnancy result from failure of the placenta to implant correctly into the uterus or womb. During early pregnancy cells from the placenta, known as trophoblast cells, invade into the uterus and tap into the mother’s blood supply to sustain the growing baby. Failure of this process can lead to insufficient supply of blood to the placenta resulting in preeclampsia, as well as low birth weight babies, stillbirth or recurrent miscarriage.

The invading placental trophoblast cells intermingle with maternal immune cells in the uterine lining. Trophoblast express not only maternal but also paternal genes and these will be different or “foreign” to the mother. Maternal immune cells can recognize these “foreign” fetal molecules and are thought to regulate the implantation process, allowing sufficient but not excessive invasion of the placenta. In the preeclamptic pregnancy this interactive process goes wrong and there is inadequate modification of the blood vessels which can lead to “starvation” of the placenta and subsequently triggering of the preeclamptic syndrome later in gestation in the mother.

The important molecules displayed by the trophoblast that are recognized by maternal immune cells are members of the HLA (Human Leucocyte Antigen) family known as HLA-C. The maternal receptors that recognize and interact with HLA-C are the KIR family (Killer Immunoglobulin-like Receptors). These two gene families (HLA and KIR) are very variable or polymorphic meaning that each mother will inherit a particular set of KIR genes and the fetus an HLA-C gene from both mother and father. This means maternal KIR will bind to fetal HLA-C can vary from one pregnancy to another. The interaction should lead to successful implantation but sometimes the combination of these genes from mother and baby results in inadequate invasion and leads to complications in the pregnancy.

Last month, in the Journal of Clinical Investigation, a team from the University of Cambridge reported new findings on the genetics underlying preeclampsia and other placental diseases. Women with a particular set of KIR genes – the KIR-AA genotype – who were carrying a fetus with a HLA-C2 gene were at higher risk of developing preeclampsia than those carrying other KIR/HLA-C gene combinations. This was especially so if the fetus had inherited the HLA-C2 gene from the father.

These genetic findings do not translate directly into therapeutic interventions in preeclampsia although it may be useful eventually in choosing a compatible sperm donor in IVF. The results tell us more about why placental implantation goes wrong sometimes. They might explain the old idea of the “dangerous male”, where pregnancy with particular men often results in preeclampsia. The report does emphasize the common underlying processes that would explain why a history of miscarriage or infertility is associated with a heightened risk of preeclampsia in subsequent pregnancies. Furthermore this risk cannot be affected by lifestyle, which helps those of us who “did everything right” to explain what went wrong.

Also this month, a team from the University of British Columbia, Vancouver, followed up on the connection between blood levels of vitamin D and preeclampsia in the British Journal of Obstetrics and Gynecology. It makes sense to think that the levels of vitamin D in the maternal bloodstream might have something to do with the later development of preeclampsia, because the vitamin is already known to affect some immune responses and because early small observational studies have shown an increased level of preeclampsia in the group of women with low vitamin D levels.

To check this, researchers measured serum levels of vitamin D in a population of women at high risk for preeclampsia, and then recorded their pregnancy outcomes. While the majority of the women had low levels (over three-quarters of the test population had lower levels than normal, and half were technically deficient), there was no connection between the severity of their pregnancy outcomes and the level of deficiency. In other words, some women with normal vitamin D levels still had severe preeclampsia, and some women who were deficient according to current guidelines did not go on to develop preeclampsia at all. This finding suggests that supplementing vitamin D may not have an effect on preeclampsia, although it is still interesting that women who develop the condition also tend to have low levels. There may be some connection between "having the sorts of genes or environment that lead you to develop low levels of vitamin D" and "having the sorts of genes or environment that lead you to develop preeclampsia."

 

A special thanks to Dr. Ashley Moffett, University of Cambridge, and Dr. Timothy Green, University of British Columbia for their expertise and technical input.

 

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Posted on in Research

Currently there's no way to know for certain whether preeclampsia will develop during any given pregnancy. This leaves pregnant women and their care providers with little choice but to wait for symptoms to appear... dangerous symptoms that mean the disease has progressed to the point where mother and baby are critically ill and will need intensive monitoring and carefully timed delivery to protect their health and lives. The only screening method to date is to measure those symptoms when they appear.

Early detection wouldn't be a treatment. But what if a screening test could let us know, weeks or even months in advance, that we'd probably be getting ill? Knowing might change the way we seek care - possibly choosing specialist care providers with the education and experience to manage medically complicated pregnancies. Women in parts of the world (like Wyoming in the winter) where such care is in short supply might be moved to bigger cities where NICUs and maternal-fetal medicine (MFM) specialists are more accessible. Neonatal specialists could be brought into the consulting team, and steroid shots to accelerate fetal lung development could be planned. All of these interventions together have the potential to lower the rates of fetal and maternal death and severe complications dramatically. (By the way, you may agree or disagree with this assessment; either way, we'd really like to hear your perspective in this important survey we recently launched.)

 

Since many experts consider such a test preferable to our current screening methods, recent research has tried to find a workable test with high levels of both specificity and sensitivity. An ideal test would be one that picked up *all* cases of preeclampsia - it would be sensitive - and *only* cases of preeclampsia, with no false positives - it would be specific. In practice this is all but impossible to achieve, but it's quite possible to find tests with very high levels of sensitivity and specificity, with one measure performing slightly better than the other.

 

So for researchers this creates a choice between creating tests that would produce false positives, and tests that would miss some cases. The worst-case scenario of a false positive is likely to be unnecessary close monitoring; it would not be an indication for immediate delivery. It would provide a reason to follow the pregnancy more closely for symptoms that do indicate that the acute phase of the illness has developed. Since the worst-case scenario of a false negative is a missed case of preeclampsia leading to death of mother and/or baby, public health researchers would prefer to develop tests that will overdetect cases of preeclampsia, but with a low rate of false positives.

 

At a meeting of the American Society of Nephrology (ASN) in November, Dr. Vesna Garovic (Mayo Clinic) reported on a study into the use of urinary podocytes as a screening test for preeclampsia, a test that may turn out to have both high sensitivity and specificity for preeclampsia. Podocytes are cells which line the blood vessels in the kidneys and act as filters which keep protein in the bloodstream. Their loss allows protein to spill into the urine, one of the primary signs of preeclampsia.

 

Garovic's research team used a population of 267 women and collected their urine between 25-28 weeks gestation. The samples were examined for podocytes. The 15 women who went on to develop preeclampsia all had podocytes in their urine at that gestational age. The 15 women who developed gestational hypertension did not. The control group of women who had normal pregnancies also did not.

 

Previous research from the same group has indicated that podocytes are present in the urine when preeclampsia symptoms first appear. When they shed into the urine, they cause disruptions in the filtration barrier in the kidney, resulting in proteinuria. The "classic lesion" of preeclampsia - glomerular endotheliosis - may include the loss of these podocytes from the glomeruli in the kidneys.

 

To confirm that this test works well, it will need to be repeated in multiple centers serving broader populations of pregnant women, and to make it available for general use, it will need to be turned into a commercially available testing product. That said, these are very hopeful results - unlike the soluble factors researchers are also pursuing, podocytes appear to only be elevated in women who go on to develop preeclampsia. The soluble factors are elevated in all pregnant women, and just unusually elevated in preeclamptics, which makes it very difficult to develop a screening test with high sensitivity and specificity.

 

Interestingly, it's likely that the podocytes are damaged because of the increased level of sFlt-1, which binds VEGF, which impairs repair of the podocytes and increases the rate at which they die off. It seems likely, given this new research, that it will be easier to detect the damage to the podocytes themselves than it will be to detect an increase of the soluble factors above the point where damage is likely.

 

If it's possible to develop a test similar to a standard pregnancy test, this might be a very effective method which wouldn't require laboratory work, and would make screening much easier and more rapid. Pregnant women who will likely go on to develop preeclampsia could be moved to the care teams that manage complications before they are critically ill, allowing both them and their babies to receive appropriate medical care that would probably reduce poor outcomes substantially.

 

 

A special thanks to Dr. Vesna Garovic at Mayo Clinic, for her expertise and technical input.

 

 

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Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.

For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

These regional networks have been widely credited as one of the principle reasons for the rapid decline in neonatal mortality rates in the last several decades. Although, the other principal reason is the introduction in the late 1980s of surfactant replacement therapy, which reduced the incidence of lung disease in newborns.

In Illinois, especially the Chicago area, Preeclampsia Foundation volunteers have been making presentations about the Foundation to various perinatal networks. These volunteers share their stories and information about resources available through the Foundation. They also ask for input on what additional materials would be helpful. From these discussions came the development of a unique HELLP syndrome seminar involving a point-counterpoint type of presentation contrasting the input of Dr. Judith Hibbard of the University of Illinois-Chicago against that of HELLP survivors' real world experiences. As a result of these presentations, orders for the Foundation's patient education materials have increased tremendously. These interactions have also provided good opportunities for raising awareness about upcoming Promise Walks for Preeclampsia™.

Debbie Schy from Advocate Lutheran General Hospital is one of the current co-chairs of the Perinatal Outreach Educators of Illinois and has attended presentations from Foundation volunteers. "We're so appreciative of the volunteers from the Foundation," said Schy. "They are a phenomenal group and we are lucky to have you here."

The Foundation is working with local volunteers to take the success we've enjoyed in Illinois to other major markets across the nation.

 

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Is there a nutritional connection to preeclampsia? That idea seems plausible at first, as when the blood samples of women have been analyzed, some researchers have found altered levels of various vitamins and minerals. Furthermore, preeclamptic women have altered patterns of weight gain during pregnancy; and obese women are more likely to develop preeclampsia.

 

Such considerations may lead one to speculate that certain diets may prevent or reverse the disease, in which case the appropriate diet becomes a therapeutic intervention. However the best research to date suggests this just isn't so.

 

Reviews of all the trials we could locate show that the major and well-designed trials mainly show no benefit. The very large trials show either no benefit to the generalized population (i.e. Calcium supplementation), or even potential harm (i.e. Vitamins C and E). Likewise, attempts to alter rate of maternal weight gain during pregnancy towards normal levels does not alter preeclampsia rates either.


In some instances, preeclampsia itself might be causing the alterations in nutritional status. The placenta, because it is shallowly implanted, needs to use other strategies to improve its ability to ferry nutrients to the fetus, strategies that include altering the maternal metabolism. In addition, obese women may be more likely to carry genes that both make them more likely to develop obesity in a modern environment and to develop preeclampsia in pregnancy.


The example of Vitamin D shows how one such supplementation research line has developed and been disproved. Sure, vitamin D levels are lower in early-onset preeclamptic women, but this happens once the symptoms of the disease have already appeared. And if we check women at the end of the first trimester, the women who will go on to develop preeclampsia cannot be picked out of the rest of the population. Some reviewers wonder if the researchers analyzed the correct form or metabolyte of Vitamin D when deciding if the woman is "deficient." Supplementing vitamin D doesn't seem to do much beyond raising vitamin D levels in blood work

 

That said, there is an important role for nutrition in pregnancy and it behooves everyone to check with a qualified health care provider to assess the appropriateness of their diet as soon as they learn they are pregnant.

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By Dr. Anne Wallis ~ Who remembers the first season ER episode "Love's Labours Lost"? The answer: pretty much anyone who ever watched ER! In the episode, a pregnant woman presents to the emergency room with a complaint of bladder problems, has a seizure and later dies. This was my first exposure to the hypertensive disorders of pregnancy. Eclampsia is, thankfully, rare, but it carries a high case fatality rate for the mother and/or the infant. Gestational hypertension and preeclampsia are far more common, affecting between 5% and 8% of all pregnancies in the US. Moreover, these conditions are on the rise and globally, these conditions are a leading cause of maternal and infant illness and death.

Obstetric providers are acutely aware of the dangers of preeclampsia because of its potential severity and rapidity of onset and progression, making high-quality prenatal care and patient education essential.

Unfortunately for patients, preeclampsia education is not a required component of prenatal care visits, though the Preeclampsia Foundation is working hard to change this. Perinatal practice guidelines currently published by the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) provide no guidance to providers regarding patient education to help women recognize early signs and symptoms of preeclampsia, which could guide them to early diagnosis and improved clinical management.

Little is known about how many prenatal care providers discuss preeclampsia with their patients or if women understand what is communicated to them when such discussions occur. In response to this fundamental gap in knowledge, the Preeclampsia Foundation conducted an internet-based survey in March and April of 2008 to determine what women learned about preeclampsia in the context of prenatal care during their first pregnancy (2000-2008). The study is currently being submitted for publication, but the results were surprising and could help health care providers make informed decisions about patient education.

Only 40% of the women indicated that their prenatal care provider "definitely" described preeclampsia; 35% said they were "definitely not" given information about preeclampsia, and the remaining 16% did not remember. Of those who definitely had preeclampsia described to them, slightly more than half said they "fully understood the explanation," 37% "understood most of the explanation," while 15% either "understood some of the explanation," or did not remember.

Here is the really interesting bit: a full 75% of women who said they "definitely" received information on the signs and symptoms of preeclampsia and understood "fully" or "most" of the explanation, indicated that because of this information, they took one or more of the following actions:

Reported symptoms to their provider,
Went to the hospital,
Monitored their own blood pressure,
Complied with an order of bedrest,
Responded in some other way (e.g., made dietary changes, did their own research on preeclampsia).

However, of those who did not understand the explanations provided, only 6% took any action based on the presence of symptoms.

Survey participants tended to be well-educated and middle class, making the importance of what we learned from this online survey clear: even among well-educated, middle-to-high income women, a substantial proportion were not told about preeclampsia or did not fully understand their providers' explanations about the signs and symptoms of preeclampsia. Our findings likewise suggest that when women know how to recognize the signs and symptoms of preeclampsia and they understand the explanation offered, they are likely to act on that information and contact their provider or go to an emergency department.

It follows logically that women with fewer resources and less education, who may also be at higher risk for preeclampsia, may receive and retain even less information; and due to disparities in health care access, they may not have adequate resources to report symptoms to a provider.

Education about preeclampsia and related hypertensive disorders must continue into the post-partum period so that women can recognize prodromal symptoms of post-partum and late post-partum eclampsia. Most cases of eclampsia that develop after the first 48 postpartum hours are first seen in an emergency department. A woman with legitimate complaints who presents at an emergency department may leave untreated if the staff are emergency or trauma providers, not OB/GYN specialists. Thus, women not only need basic education in preeclampsia, but they require repeated education to ensure they understand the risks and can be empowered with knowledge that will allow them to advocate strongly for their own care.

We offer several recommendations based on our observations:

More research is needed to fully assess the health literacy, knowledge, attitudes, and behavior of pregnant women and to examine the practices of prenatal care providers;
ACOG/AAP guidelines for prenatal care should include more deliberate and detailed explanations of the hypertensive conditions of pregnancy;
At all prenatal visits, providers should clearly explain warning signs and symptoms with directions about what their patients should do if they experience or recognize any of the signs or symptoms.
All women should be hearing a strong public health message that they can and should be advocates for their own care.

Guest columnist Dr. Anne B Wallis, University of Iowa, also wrote on this topic in her blog, [bloga epidimiologica]. It's worth reading the longer version, especially if you like the science-y stuff.

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Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!

However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.

An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, and make educated decisions. And if she doesn't have the appropriate relationship with her providers, she is confident about asking for what she needs or seeking help elsewhere.

Sometimes it takes a third party to help her get what she needs. A trusted partner, family member or friend sometimes fills that void. Often, our Community Forum becomes that life-saving voice that pushes her to seek immediate medical attention and acknowledge that inner voice that says something just isn't right.

A great example is this case, when Jonathan Barker became a worried husband, got involved in his wife's care and later said, "One piece of advice that the moderators on the Foundation's Forum always shared is that preeclampsia can strike at any time and can get very ugly, very quickly. It is a piece of advice that made the difference." And if you want a laugh about this empowered dad stepping in, read about his experience shopping for nursing bras. That's one lucky wife!

A recent mom had extreme birth anxiety, which is not uncommon for preeclampsia survivors. She advocated for herself and was able to get a sedative during delivery, improving her birth experience considerably.

A mom who had lupus, putting her at much higher risk for preeclampsia, wasn't receiving the kind of care or information she should have. She changed providers thanks to the encouragement of her online support system. Later, despite having preeclampsia, she wrote, "Thank you guys so much! I couldn't have gotten to this finish line without you! I was so knowledgeable and cautious. Got that from this website!"

These stories and many more confirm the importance of sound information and strong support guiding your role as an empowered patient, one of the hallmarks of patient-centric care.

I want to thank Heather Curtis and all our Forum moderators for the smart and empathetic support they provide every day. It's not an understatement when we say they have literally saved lives!

 

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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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