As the doctor reviewed the baby’s vitals and measurements, he concluded that Su’s son was in the 86th percentile for his height—pretty tall for an infant. “At this point he looked up at me, of East Asian ancestry and 5'6" on a good day, and said ‘We'll see how long that lasts,’ ” Su remembered. “And although he was joking, the point hit home with me: the CDC’s growth charts just don't apply for my son, just like they didn't apply for my wife during pregnancy.”
Su realized there was a need to reevaluate commonly held views about what constitutes “normal” when it comes to pregnancy and a baby’s first months.
Jennifer Radin, a Dickinson Fellow with the Digital Medicine Division at the Scripps Translational Science Institute (STSI), noticed a similar gap between recommendations and reality during her recent pregnancy. “For example, the guidelines for healthy weight gain during pregnancy are very general recommendations for all pregnant women, regardless of factors such as race, height, age, etc.,” Radin explained. “In fact, only about one-third of women even meet these recommendations, with 48 percent gaining too much and 21 percent gaining too little.”
Clearly, there is a need for more personalized growth and health recommendations that can factor in age, race, medical history and more.
Inspired by their own experiences, Su, Radin and their colleagues at TSRI and STSI are now hoping to take some of the uncertainty out of pregnancy. They recently launched The Healthy Pregnancy Study, a partnership with WebMD, which gathers survey data from volunteers using the free WebMD Pregnancy app for iPhones, based on Apple’s ResearchKit software.
Using the app, volunteers anonymously share demographic information, as well as information on their medication use, vaccinations, blood pressure, pre-existing conditions, weight change and much more. In return, participants can follow data trends throughout pregnancy.
After their baby is born, study participants will also be asked to provide information on interventions regarding the birth process and birth size of their baby. This will help the researchers connect the dots between conditions during pregnancy and birth outcomes. “Our goal is really to help the individual user feel more informed about her pregnancy,” said study co-leader Steven Steinhubl, Director of Digital Medicine at STSI, Associate Professor of Genomic Medicine at TSRI and a cardiologist at Scripps Health. “As we collect more data through this app, we hope to show women how their data compare to other women with similar characteristics,” added Radin. “This type of participant engagement is not easy with a traditional clinical study where participants don’t often have access to the data they provide.”
Radin is especially curious to study the data collected on medical prescriptions. “One gap in knowledge is how medications can affect pregnancy. Many medications are pregnancy ‘category c’—meaning there have been no adequate human studies to show safety in pregnant women,” Radin said. “So one app survey question asks users to share prescribed and over-the-counter medications. By collecting observational data on this, we may be able to better understand how these drugs impact pregnancies.”
Pregnancy can feel like a long nine months, so the study leaders are looking forward to giving women a chance to be more active in their own healthcare. “People involved in this study are partners, not subjects,” Steinhubl said.
Source: Scripps Research Institute