Improving the Lives of Children: Hassenfeld Study Staff Reflect on their Work

Fabid Serna, Phoebe Burton and Veronica Bariscillo of the Hassenfeld Study

At just over 1,200 square miles, Rhode Island is the smallest state. However, it presents big opportunities for studying child health. With just one medical school, one children’s hospital and one women’s hospital, Rhode Island is the perfect place for collaboration and innovation in children’s health.

The Hassenfeld Study, established in 2017, is made up of two cohorts: the prenatal cohort and the birth cohort. Participants are enrolled either at clinics during early pregnancy (the prenatal cohort) or at Women & Infants Hospital after they’ve given birth (the postnatal or “birth” cohort). Hassenfeld Study staff follow up with participants on an annual basis to gather crucial information about their health and the health of their babies.

The research from the Hassenfeld Study will lead to novel discoveries about child health, especially childhood asthma, autism and obesity and overweight, the Hassenfeld Institute’s core initiatives. Equally important are the relationships that staff build with Rhode Island moms and their infants, year after year.

In July, the first baby enrolled into the study will turn three years old. Here, a few of the study’s research assistants reflect on their time with the Hassenfeld Institute, what they like best about their work and what makes the Hassenfeld Study so important.

'Something to celebrate'

Fabid Serna likes to say that it was divine intervention that led her to work on the Hassenfeld Study. Serna was working at a bank in 2016 when she came across a job posting on the Brown University website for a bilingual research assistant position with the Hassenfeld Institute. When Serna went in to interview for the job, the hiring manager turned out to be one of Serna’s customers.

“She loved that I gave great customer service. That made a big impression on her. When working with patients, you have to be relatable and able to connect,” Serna said.

Serna was the first RA hired for the study, and her customer service skills came in handy right away. Serna was assigned to the prenatal cohort, where RAs enroll women in the early stages of pregnancy and routinely follow up with them and their babies. Serna said she quickly built a rapport with many of the enrollees by answering any questions they had about the study and putting them at ease.

“They want to know how their participation will impact the community. I use the example of how we didn’t know until fairly recently that smoking cigarettes and drinking alcohol during pregnancy could harm babies. Now, we’re able to educate people,” Serna said.

To Serna, who is a mother of three children, the importance of the research that will come from the Hassenfeld Study--and her role in it--is what is most rewarding.

“I know what I’m doing now is going to improve the lives of children. We are focusing on such important topics, particularly autism, and there is so much more to learn,” Serna said.

Now, Serna’s main focus is the birth cohort, which enrolls women who have just given birth at Women and Infants Hospital. Recently, Serna became certified in the NICU-Network Neurobehavioral Scale (NNNS) exam, which provides a comprehensive assessment of a newborn’s neurological integrity and behavioral function.

“Parents get really excited to see that their babies can already crawl or move their little tushies when we tickle their backs,” Serna said.

Serna and her colleagues realize that new moms have a lot going on, so they try to make participation as easy as possible. After enrollment, staff follow up with participants via email and then meet with them during annual visits.

“I try to reassure them that it’s an observational study, which means we won’t ask them to change anything they do,” Serna said.

For Serna, the best part of the job is being able to motivate and encourage the new and expectant moms she meets.

“Whenever anybody decides to participate I feel like it’s something to celebrate,” Serna said.

'I can see the joy when they tell me they are pregnant.'

Veronica Bariscillo was not looking to work in research, but research found her, she said.

In 2008, Bariscillo was taking time off to raise her daughter when a friend told her about a study at Brown that needed bilingual research assistants. Bariscillo was hired and enjoyed it so much that she stayed on with Brown after the study ended, assisting on several more studies that were working with the Spanish-speaking population.

“I’m good at relating to people and putting myself in their shoes,” Bariscillo said.

In 2017, Bariscillo was one of the first two research assistants hired for the Hassenfeld Study. She currently focuses on enrolling women into the prenatal cohort and following up with them over the phone and during annual visits.

“We have really great communication with them, and with the clinics where we enroll them. We make it really easy for them to participate,” Bariscillo said.

The study follows women from the early stages of pregnancy through their child’s first five years to make sure the children are hitting their milestones and the moms are healthy, too. Bariscillo likes to make sure that participants understand that while it’s easy to participate, it is a commitment.

“What I tell participants from the beginning is that I’m excited, but the most important thing is that they’re telling me that in the next five years they will do everything that is asked of them for the study, because that’s where the important work takes place,” Bariscillo said.

Bariscillo has found that many of the participants are eager to participate in a study that will impact the health of children. She said this is the first study she’s worked on where participants are actually calling her and asking what more they can do.

“They’re calling us and saying, ‘I completed the survey. What’s the next step?’,” Bariscillo said.

Bariscillo is excited about what researchers will learn from the study, but equally important to her are the emotional connections that she forges with moms and their babies.

“When I interact with potential participants, I can see the joy when they tell me they are pregnant. But really, the best part is that we get to meet the babies when they are one day old," Bariscillo said. “That’s awesome!”

'At the end of the day, it's about helping kids.'

After graduating from college with a degree in business, Phoebe Burton decided to follow her heart and pursue her longstanding interest in medicine. Burton, who worked as an EMT all four years of college, said she has always been interested in infant health, childhood obesity and gestational diabetes.

So, when the opportunity to work with researchers in these areas came along, she jumped at it.

Burton joined the Hassenfeld Study in 2018 as a research assistant. She enrolls women into the postnatal cohort, meaning she approaches women about the study shortly after they have given birth at Women & Infants Hospital.

“It’s important to build a connection with potential participants because their involvement has an impact on children everywhere,” Burton said.

The women she approaches understandably have a lot of questions, Burton said, from the time commitment to confidentiality.

“We make it clear that this is a five-year journey, but the commitment level is low. It’s also important to discuss confidentiality and that we keep their information protected. At the end of the day, it’s about helping kids, and helping kids to be healthier,” Burton said.

In addition to enrolling participants, Burton follows up with them over the phone or in person, and she was recently certified in the NNNS exam, a brief infant exam that tests a baby’s reflexes, movements and responses to toys and faces. A new study led by Stephen Sheinkopf, Ph.D., who co-leads the Autism Initiative at the Hassenfeld Institute, will examine whether an infant’s cry or behavioral responses can be early predictors of autism. This study, funded by the National Institute of Mental Health, has the potential to lay the foundation for innovative ways to screen for autism and developmental disabilities early in life.

Burton performs the NNNS exam shortly after a baby is born, and she loves being able to show parents the innate reflexes that their baby already has. The exam allows Burton to give new parents advice on the best way to soothe their baby or stimulate them.

“I can tell parents, ‘Your baby really likes to have her hand held,’ or, ‘Your baby really hates the pacifier.’ We view babies as blank slates, but they have a personality from day one,” Burton said.

Because of the coronavirus pandemic, Burton and her colleagues have been unable to recruit new participants, and all follow-up appointments have taken place over the phone. As of June, however, the Hassenfeld Study faculty and staff were discussing plans for safely resuming enrollment.

If there’s any silver lining to the pandemic, Burton said, it’s that they are conducting a survey of study participants to learn how COVID-19 may have affected their health or the health of their children.

“The data we get will be huge. We can use it to impact public health. It will help us to be better prepared for potential reoccurrences,” Burton said.

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Learn more about the Hassenfeld Study.