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NIH launches project to crowdsource pregnancy health information

The National Institutes of Health has launched a project to improve the understanding of pregnancy through crowdsourcing information gathered through surveys.

Known as PregSource, the project presents data collected through surveys as an informational resource for doctors, researchers, and women experiencing pregnancy.

“PregSource benefits everyone – the participants, their healthcare providers, and the research community," said Dr. Diana W. Bianchi, director of NIH’s National Institute of Child Health and Human Development, which leads the project. “The project also will generate much-needed data to help researchers address long-held questions about maternal and fetal health.”

“Another driving goal of ours was to have PregSource be a resource for women where they could go one-stop-shopping for trusted pregnancy-related health information that we have collected,” added Dr. Caroline Signore, a lead researcher at NICHD involved in the project.

The database uses surveys ask a series of questions about various aspects of a woman’s pregnancy including sleep, mood, morning sickness, and weight. Participating women submit voluntary and anonymous surveys on their own time to share their experiences through pregnancy and post-pregnancy.

Women ages 18 and older are eligible to join, and there is no cost or membership fee.

Signore explained crowdsourcing data had advantages over studies that use traditional survey gathering methods.

“One of the traditional limitations in research is that in a standard model a woman presents herself [at] a research center and meets a researcher and that works well as long as there are large populations of people who are willing to make special trips to these centers,” said Signore.

“What PregSource offers is the ability to fill out questionnaires one a women's own [schedule] and as often as she wants," Signore added. "It’s often not feasible, in a traditional research setting, for women to report to provide data every day or every week.”

She also added that crowdsourcing also allows researchers access to data on subgroups that tend to be under-researched. According to Signore, these include women of racial minorities or women with physical or mental disabilities.

“It is difficult for a research center to collect enough information from women who belong to underserved groups to make any real conclusions,” she said. “By being able to collect data not only throughout the U.S. but worldwide, we can collect more information about women who are members of these smaller groups.”

PregSource opened to the public in September 2017 and, according to Signore, it was too early to assess the amount of data already gathered. She explained future outreach campaigns are planned to raise awareness of the project.

“We were intrigued by the growing paradigm of citizen science and with the advance of technology and social media that women are becoming more comfortable with using the internet and entering data online,” Signore said.

NIH’s collaborators on the project include American Academy of Pediatrics, the Endocrine Society, Genetic Alliance, The Society for Women’s Health Research and numerous other professional societies and nonprofit organizations.

@NickolaiSS

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