NJ Universities Team to Save a ‘Goldmine’ of Underused Data

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From 1985 to 2006, nearly 5,000 pregnant females aged 12 years and older from Camden, New Jersey—one of the poorest cities in the U.S.—participated in a study focused on maternal and infant health. Although the resulting data yielded more than a decade of significant papers, the repository never gained widespread recognition.

Instead, eight freezers of biospecimens and a mountain of data have sat at Rowan University in Glassboro, NJ, under the careful management of Xinhua Chen who—with retirement looming—didn’t know what was going to happen to all the data.

Luckily, Rutgers University health researchers Zorimar Rivera-Núñez and Emily Barrett noticed the Camden study cited in many of the papers they were citing for their own research.

“We started looking for more papers from the Camden cohort, and more papers and more papers. We were just like, ‘Oh my god, what is this cohort in our home state that we don’t know about?’” said Rivera-Núñez. She and Barrett ultimately reached out to Chen, who explained she was looking for a new steward for the data.

Two months later, Rivera-Núñez and Barrett orchestrated the move of the eight freezers and ensured the data’s integrity, de-identifying it to comply with regulations. Rutgers was able to provide the lab space, funding and support to house all the material. Now, only the original participant links remain at Rowan, where they preserve the potential for future follow-up studies.

“[The move] was intense and challenging,” said Barrett.

“We’ll be forever grateful to Dr. Chen,” added Rivera-Núñez. “We hope to continue her legacy and maximize the contribution her work makes for better public health.”

Indeed, the Camden study has gained a new lease on life in a different part of New Jersey now.

A unique study

The Camden study is unique in multiple aspects. First, it captures health data from a historically underrepresented population. In the first iteration of the study, participants were 45% Hispanic, 38% non-Hispanic Black and 17% white participants, with 98% receiving Medicaid during pregnancy. Additionally, many of the participants were teenagers when they began the study, with some as young as 12 years old. Since teen pregnancy numbers have declined significantly in recent decades, a modern cohort would likely not afford the researchers the opportunity to study the dynamics of adolescent pregnancy in such a robust sample.

Second, the depth of the Camden study sets it apart. Participants underwent maternal interviews, dietary assessments and clinical measurements such as anthropometry and blood pressure. Additionally, blood, urine and saliva from mothers, as well as cord blood from infants, were collected and stored. The study ultimately includes data from pregnancy through postpartum visits up to 6 months for some patients.

The findings from the original research team showed that adolescent growth during pregnancy correlates with smaller neonatal birth sizes, as there ends up being a nutritional tug-of-war between growing mother and fetus. Low dietary zinc intake early in pregnancy was linked to a threefold increase in very preterm delivery (before 33 weeks), while higher circulating fatty acid levels predicted greater insulin resistance. The study also uncovered racial and ethnic disparities, such as lower adiponectin levels in Black women tied to higher preterm birth risks.

While these discoveries generated many subsequent papers, there is so much data that even after extensive publications, much of it has never been fully mined.

Then and now

Now at Rutgers, the data has gained new life. Rivera-Núñez and Barrett have assembled a team to explore the information and develop new research projects.

For example, with 13 designated Superfund sites in Camden County, the cohort provides a resource for studying environmental exposures and pregnancy outcomes, an area that has received little attention to date. The biorepository also offers unique opportunities to apply modern analytical techniques to historical samples given the advancements in technology since first analyzed the data in the 1990s.

Lastly, there is potential for extensive follow-up. The Rutgers team hopes to re-engage some of the original participants, who would now be in their 30s to 70s, and the children from these pregnancies, who would now be young adults. These follow-ups could result in discoveries about long-term maternal and child health outcomes.

 

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