PregSource: Using input from pregnant people to uncover the secrets of pregnancy

Last updated on August 10th, 2022 at 09:54 am

What is PregSource? 

PregSource®: Crowdsourcing to Understand Pregnancy is a research project that collects data about pregnancy from the early stages through birth directly from pregnant people. Participants are invited to share information such as their health history, changes in weight and sleep patterns, and labor and delivery experiences using confidential online surveys. The PregSource resource library provides information from NIH and other trustworthy sources to answer pregnancy-related questions.

The project is led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Since its launch in 2017, the project has received data from more than 2,000 pregnant people.  

Why was it created?

Even though many people across the globe experience a pregnancy in their lifetimes, there’s still a lot scientists don’t know about what a typical pregnancy looks like. For example: 

  • How many people experience morning sickness? When in their pregnancy does it start or stop? 
  • How does pregnancy affect sleep and energy levels? 
  • Are there warning signs for pregnancy complications? If so, when are they detectable? 

“Very little is known about what a typical person in the 21st century can expect from a pregnancy,” says NICHD’s Caroline Signore, M.D., M.P.H., who leads the PregSource project. “Much of pregnancy research focuses on problems. While we have learned a great deal about preventing and treating certain pregnancy complications, we know comparatively little about the everyday, lived experiences of pregnant people. The PregSource project aims to fill these knowledge gaps and provide data that informs guidance and recommendations for maintaining a healthy pregnancy. 

The PregSource project incorporates newer crowdsourcing techniques to gather information about pregnancy experiences from pregnant people, rather than relying on health care providers to collect the data. The study’s confidential, secure online platform allows participants to add their information from any place, at any time. 

Who can join PregSource?

Any pregnant person between ages 18 and 70 can participate in the PregSource research project. It’s free to join, participants can decide which questions they want to answer, and they can opt out at any time. Users can input information on their own schedules, preferably at least once a month. 

How are the data used?

Right now, the study is in a data collection stage. After this stage of the study ends next year, the dataset will be made freely available to researchers through NICHD’s Data and Specimen Hub . Researchers will be able to use the grouped data to look for trends, similarities, and differences in people’s pregnancy experiences. 

To protect users’ privacy, all data has names and other identifying information removed. Only PregSource coordinators see personal information, and they are trained to protect user privacy and keep data secure. 

What’s next for PregSource?

As of December 2021, PregSource is available as an app for Apple devices as well as in an online format. Having PregSource easily available on a smart device makes it easier for pregnant people to give updates on their own schedules. An “award” system, in which users earn badges for making a certain number of entries in a week, is also new in the app. 

Alternative accessible version (pdf)

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