Introduction to PregSource™

PregSource™ is a new research project out of the Eunice Kennedy Shriver National Institute of Child Health and Human Development that aims to learn about the pregnancy experience. Getting information directly from pregnant people about what they feel, think, do, and experience during pregnancy and after giving birth can teach us more about pregnancy and how to improve care. Childbirth educators and other birth professionals can play a critical role in recruiting study participants. PregSource™information collected will be aggregated and used to answer the following questions:

• How many women experience morning sickness or nausea? How long does it generally last? How often do they get it, and when during the day does it occur? In what part of the pregnancy is it more common? Does it affect women's weight?
• How much does being pregnant affect women's sleep and energy levels? How do these change over the course of the pregnancy?
• In women who develop pregnancy problems or complications, are there any warning signs before symptoms arise or the problem is diagnosed?
• How does pregnancy affect women's day-to-day lives?
• What are the unique pregnancy challenges faced by certain women (such as women with physical disabilities)?

Caroline Signore MD, MPH, is a board-certified obstetrician-gynecologist, and the Deputy Director of the Division of Extramural Research at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. She joined NICHD in 2003, first in NICHD's Division of Epidemiology, Statistics, and Prevention Research and then as a Program Official in the Pregnancy and Perinatology Branch. Dr. Signore completed her obstetrics and gynecology residency at the University of Florida and a masters in public health at The George Washington University. Dr. Signore is a fellow of the American Congress of Obstetricians and Gynecologists. Dr. Signore is the Principal Investigator of the PregSource™ project.

I asked to speak with Dr. Signore so that I can share more information with all of you about the goals of the project.

The interview

SM: Thank you for taking the time to share information about this fascinating program. How many people have so far participated in PregSource™ and what is the goal of the researchers for total participation?

CS: In our initial launch phase, we registered approximately 300 participants. We have set for ourselves an ambitious goal of 100,000 participants total.

SM: When do you feel the first research will be published from the PregSource™ database and what will be the topic?

CS: Very difficult to answer as many variables would contribute.

SM: Can any researcher apply to have access to the data if they have a need? Will the database be made public so that interested parties can pull their own reports?

CS: Yes, a founding principle of PregSource™ is that it will serve as a resource for investigators interested in studies of the contemporary pregnancy experience. Waves of de-identified data will be made public as they are accrued in sufficient numbers. Any researcher will have the opportunity to apply for access to the data. A future feature of PregSource™ will be what we call a 'Professional Portal' that researchers could use to browse through the aggregated data before requesting access. To protect participants' privacy, all available data will be de-identified prior to release.

SM: Are you and other researchers pleased with the level of information being shared by the participants?

CS: We are only a few months into the data gathering process, and PregSource™ is designed to follow women throughout their pregnancy and beyond. It is a bit early to make any conclusions about the level of information that is being shared.

SM: Are there any trends about who is signing up? Age or geographic area or other categorization?

CS: We fully intend to assess our data for demographic characteristics; at this point, we don't feel our sample size is large enough to make any stable conclusions.

SM: What are some of the most valuable pieces of information that you expect to be available from this database?

CS: One of the benefits of crowdsourcing in research is that we can collect information in a cost-effective way from very large numbers of participants. This approach can enable research on conditions and outcomes of pregnancy that are relatively rare, such as multiple pregnancies, liver disease in pregnancy, or the pregnancy experiences of women with physical disabilities.

In addition, even though pregnancy is as old as time, we have surprisingly little robust data about healthy pregnancies. In the care of pregnant women, for example, health care providers do not yet have answers to basic questions on diet, weight gain, morning sickness, or sleep. What if we could collect reliable information about healthy pregnancies and the impact of pregnancy on long-term health?

SM: What impact will this information have on the future of maternal-infant health?

CS: By participating in PregSource™, women will be able to print out questionnaires and graphs of the data they have entered and use them to have discussions with their care providers. We believe this will help currently pregnant women have a positive impact on their care and outcomes. By becoming PregSource™ participants, women can improve pregnancy for future mothers by helping researchers and healthcare providers better understand the range of physical and emotional experiences that women have during pregnancy and after giving birth. Another important feature of PregSource™ is the Resource Library: this is an accumulation of pregnancy, birth, and child development resources provided by our partner organizations. PregSource™ participants can use these trusted resources to learn more about their pregnancy health and begin discussions with their providers.

SM: Do you think any of the data being collected will be helpful in reducing health disparities amongst pregnant people of color and their babies?

CS: Here is another example of where we believe the crowdsourcing approach can have high impact. PregSource™ has the opportunity to collect data from an extremely diverse group of women, in a systematic and organized way. Examination of this large volume of data can provide insight into the reasons behind persistent disparities in perinatal outcomes experienced by women of color.

SM: How long do you expect to be enrolling people and collecting data?

CS: We have no set time limit. We will plan to continue to enroll women into PregSource™ until we have built a robust database that can really help researchers gain insight into pregnancy health.

SM: What current 'understanding' of the pregnancy experience do you think is seen as common knowledge that most likely will be turned on its head when the data is examined from the PregSource™ database?

CS: It may be surprising to hear, but we know very little about the typical experience of pregnancy, childbirth, and beyond among women in the 21^st century. PregSource™ will enable researchers to better investigate patterns of gestational weight gain, the incidence and duration of nausea and vomiting of pregnancy, and how sleep patterns change.

SM: How can childbirth educators and other birth professionals help you to get the word out to expectant families and encourage them to participate?

CS: We urge childbirth educators and other birth professionals to mention PregSource™ to the women and families they work with. We have an impressive array of materials (e.g., a digital sign, patient and provider handouts, and printable postcards and posters) that groups can share with people in their practice. Birth professionals interested in these items can access them here.

SM: Currently, where are most of the enrolling participants coming from? How are they hearing about the program? How have you gotten the word out?

CS: Our initial promotional efforts have led to articles in the news and on social media, which have driven traffic to our site. We have conducted outreach activities with two of the PregSource™ partners, the American College of Nurse-Midwives and Lamaze International, and we plan to expand these efforts to all of our partners. We will continue to use social media and other promotional opportunities to spread the word about PregSource™ and enroll more women.

Conclusion and how you can help

There are many resources that educators and other professionals can share with the families they work with to help them become familiar with the PregSource™project and consider participating. PregSource™ has a comprehensive FAQ section that addresses many questions and potential concerns for those interested in participating. Additionally, Giving Birth With Confidence has covered this topic on our parent blog: "Will You Be a Source for PregSource™?" Science & Sensibility has covered this topic on the professional side in "Invite Your Families to Support PregSource™: A Research Project to Shape the Future of Obstetric Care".

Encouraging families taking our classes to participate can help create a diverse data pool that can be used for many purposes in the years ahead. Explore the PregSource™ source website, consider sharing some of the print or electronic material and know that you are playing a role in active science and discovery.

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