Feature

NIH goes straight to pregnant women in new research project


 

Research on pregnancy is now being crowdsourced, with pregnant women being asked in a new federal research project to “tell researchers and health care providers what pregnancy is really like.”

The project, PregSource, was launched in November by the National Institute of Child Health and Human Development (NICHD). Women who join PregSource (https://pregsource.nih.gov) are asked to chart changes to their weight, sleep, mood, morning sickness, and physical activity and to answer monthly online surveys about their pregnancy experiences, symptoms, and complications. It is hoped that resulting de-identified data will help inform future studies and improve maternal care, NICHD officials said.

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The project took root years ago under the tutelage of former NICHD director Alan Guttmacher, MD, and grew as the Obama Administration held workshops and forums in 2014 and 2015 – and then developed tools and resources – to promote citizen science and crowdsourcing initiatives in the public sector.

“We had come to the recognition that we – the scientific community – lack a comprehensive database about how pregnancy affects women in the modern world,” said Caroline Signore, MD, MPH, deputy director of NICHD’s division of extramural research and principal investigator of PregSource.

“We spend a lot of time talking about the complications of pregnancy, but we don’t know a whole lot about the baseline experiences. . .the experiential trends of pregnancy” such as how many women experience morning sickness and for how long, and how pregnancy affects sleep patterns, she said.

By crowdsourcing to pregnant women themselves – by asking them to voluntarily offer data and make observations, “we’re researching on a large scale and doing so relatively cost effectively,” said Dr. Signore, an ob.gyn. “Women who are interested in contributing to science can [do so] on their own terms. They can visit PregSource on their own time and enter as much data as they want.”

Hal E. Lawrence III, MD, executive vice president and chief executive officer of the American College of Obstetricians and Gynecologists, called the project “groundbreaking” and said that NICHD should have “no problem” meeting its initial target of 100,000 pregnant women. “This is different from the other pregnancy apps,” he said. “This is more of a reporting and an informative [site], which the others aren’t.”

ACOG is one of about a dozen partnering organizations – along with the American Academy of Pediatrics and the American College of Nurse-Midwives – that have worked with NICHD on shaping the project and contributing content for a resource library that PregSource participants will have access to.

The project is currently in a “soft-launch phase,” Dr. Signore said, and will step up its outreach to women and providers in January.

Along with the current series of “trackers” and monthly questionnaires (in addition to questionnaires about prepregnancy health), women who indicate that they have physical disabilities or certain complications or conditions such as diabetes will be asked to participate in additional information-gathering modules. And once the project has amassed enough data, women will be able to compare specific experiences with those of other participants.

“A woman who’s 5 months’ pregnant and completes questions on nausea and vomiting, say, can click a button and see how everyone else who’s been in PregSource at this time has answered that question,” Dr. Signore said. “Or a woman who indicates she’s having a lot of heartburn at 27 weeks can learn about how many other women are having heartburn. We think this will be valuable for women, because [they’re] always wondering, ‘Is my experience unique?’ ”

NICHD officials said they hope women will share with their ob.gyns. or other providers the charts from their PregSource trackers, such as those plotting the individual’s weight gain against Institute of Medicine-recommended weight gain ranges. “We like to think that PregSource will promote conversations and shared decision making. . .and hopefully that it will improve that individual woman’s outcomes,” Dr. Signore said.

Indeed, said Uma M. Reddy, MD, MPH, project scientist for the NICHD’s Maternal-Fetal Medicine Units (MFMU) Network, women who use PregSource’s trackers should be “more in tune with their pregnancies” and with staying healthy. She and other experts touted PregSource at the recent biennial meeting of the Diabetes in Pregnancy Study Group.

The NICHD also plans to gently nudge women toward any relevant clinical studies underway in their locales “by simply notifying the women and making the information available to them,” Dr. Signore said. In addition, the project will invite women to track their experiences for several years after childbirth so more data can be generated on associations between pregnancy and child and maternal health. “Just as with the whole project, we’re trying to take into account the benefit-burden ratio and hope that women will continue to see value,” she said.

The NICHD-sponsored project will not sell or share any personal information to a third party, and participants will not receive any ads or product announcements. Data from the project – all of it de-identified – will be shared with approved researchers for their own analyses.

“We see it being already equipped to answer [existing] questions and to probe relationships” between pregnancy characteristics and complications, for instance, Dr. Signore said. “But it also could be a hypothesis-generating resource.”

A Spanish version will come “once we know we’ve optimized functionality and syntax,” she said. And overall, the NICHD is ready for growth, both in numbers of participants and in content.

ACOG is rooting for its success, Dr. Lawrence said. “We’ll have to wait and see how the results help us, but I’ll tell you one thing, having no data will never help us.”

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