NIMHD is committed to supporting research that increases our understanding of and improves the health of women during and after pregnancy. PregSource is an ongoing online data collection study that gathers information directly from adult pregnant women. By gathering information directly from pregnant women, PregSource can help to identify trends, similarities, and differences in pregnancy among women from diverse groups across the United States, including women who have an elevated risk of pregnancy complications as well as women with normal pregnancies. This information may generate strategies for improving maternal care in the United States. The study uses a crowdsourcing approach in which the women share their experiences during pregnancy through a free and confidential website.
PregSource asks participants about their background (e.g., age, education level), pregnancy experience (e.g., sleep, nausea, weight), overall health, labor and delivery, and baby’s health up to 36 months of age. This information is collected via online questionnaires and trackers throughout a woman’s pregnancy and after she delivers. Participants are encouraged to enter information at least once a month and as changes in health status occur.
The goals of this study are to
- Learn more about pregnancy from all pregnant women themselves and develop strategies for improving maternal care and pregnancy outcomes
- Gain information on underrepresented groups of women who commonly have specific health care needs (e.g., pregnant women with disabilities)
- Build a large resource to inform future research (data without personal identification will be made available to approved researchers for analysis)
- Support research by informing women about research participation opportunities
PregSource is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and is supported by many partners; other NIH Institutes and Centers, such as NIMHD; and national organizations. Study participants include pregnant women, ages 18 and up, who have agreed to participate. This ongoing project is accepting online enrollment of new study participants who meet these criteria.
Study Benefits and Significance
Maternal and child deaths and complications related to pregnancy are a major issue abroad and in the United States. By allowing mothers to track their pregnancies, PregSource provides a valuable resource to help other mothers. It also allows participants to share their recorded data with health care providers and to compare their pregnancy experiences with those of other participants. This firsthand information will help researchers and health care providers gain more in-depth understanding of pregnancy and learn how women from different backgrounds and with different health care needs experience motherhood. The PregSource website also offers a Resource Library to help people find answers from experts about pregnancy.
PregSource is a continuing project and has recently launched some updates. A Spanish-language version has been available since September 2019, and a mobile app is underway. New questionnaires exist for post-pregnancy and infant health up to 36 months and for special populations/topics (e.g., women with physical disabilities). A professional portal for approved researchers to access de-identified data is also in progress.