Nicklaus Children’s Hospital is responsible for providing ongoing care to over 450 pediatric patients living with inflammatory bowel disease (IBD). With such a high volume of children in need of IBD care, the team of IBD experts maintains a research program to better meet the specific needs of patients.
“Here in Miami, our patient population is unique, and that is the hallmark of our research,” says Lina Maria Felipez, MD, Pediatric Gastroenterologist, Associate Medical Director of the IBD Center, Director of IBD Research at Nicklaus Children’s Hospital, Associate Program Director of the Pediatric Gastroenterology, Hepatology and Nutrition Fellowship Program and Associate Professor at Florida International University. “Approximately 80 percent of our patients are Hispanic, and the vast majority of these are from the Caribbean.”
Improving Care for the Underserved and Understudied
The Hispanic subset of patients is historically underserved and — with most previous research performed on patients of European descent — understudied. Recognizing this, Dr. Felipez and her team launched a research program eight years ago with a clear key objective: to better understand how IBD affects these children.
The program has received a boost in recent years, courtesy of the birth of the hospital’s Pediatric Gastroenterology, Hepatology and Nutrition Fellowship Program three years ago. Through this fellowship, the research program has had a steady source of fellows to assist in research efforts.
These fellows have helped research forge ahead along the following pathways:
- Identify and engage the population. “It’s well known that African Americans and Hispanics don’t join as many clinical research studies as white Americans,” Dr. Felipez says. “To change that, we must understand their perspective and communicate as much as possible in their language. I’m a proud Hispanic doctor from Puerto Rico. As such, I understand the community and can get in touch with them and explain the importance of participating in medical research studies.”
- Determine the disease pathogenesis and phenotype. Many Hispanic patients served by Nicklaus Children’s are natives of Cuba, Puerto Rico, Venezuela and Colombia. The team of experts looks into the prevalence of diseases such as Crohn’s disease and ulcerative colitis in certain populations and identify any associations.
- Consider environmental factors. In recent years, Dr. Felipez has noticed increased incidence of IBD diagnosis in Hispanic children ages 6 and younger. Nicklaus Children’s researchers are currently investigating environmental sources that may be at the root of this increase. They’re considering where these children and their parents were born, when they came to the United States, the makeup of their regular diet and other factors that may play a role in IBD risk.
The Microbiome: IBD’s Final Frontier
Along with researching environment and disease pathogenesis and phenotype, Nicklaus Children’s researchers are pushing forward concurrently in another area, hoping to uncover new care approaches that address what is going on inside a child’s gut.
“These children’s microbiomes are key,” Dr. Felipez says. “I really think diet plays a significant role in the disease. Investigating their microbiome allows us to see if things are missing or lacking in their diet, so we can find possible solutions.”
To date, Nicklaus Children’s researchers spend much time collecting and evaluating the microbiomes of pediatric Hispanic IBD patients. Results are forthcoming. Once they’re available, the end goal is to improve patient health by diet-based microbiome manipulation.
“We have the same goal that all IBD clinicians likely have,” Dr. Felipez admits. “We don’t want to work our way through all available medications. We want to know what will help a specific patient and provide that therapy, whether that requires medication or diet therapy.”
Reaching Beyond Nicklaus Children’s
Though the Hispanic community has not willingly engaged in clinical research in the past, that is changing thanks to the efforts of experts at Nicklaus Children’s. Our specialists aren’t the only clinicians eager for growing understanding of and care for this oft-overlooked group.
Similar research efforts are underway for the pediatric population in other IBD centers. Eager to glean useful information from those studying IBD in Hispanic adults in the nearby community, Dr. Felipez works closely with our Florida-based counterparts and anticipates collaboration in the near future.
“It’s hard to extrapolate information from other studies, and that lack of information is unjust,” Dr. Felipez says. “That’s why I’m so passionate about helping Hispanic voices be heard. By teaching children good habits they can sustain from an early age, we hope they’ll maintain a higher quality of life.”
To refer a pediatric IBD patient, email Dr. Felipez or a Nicklaus Children’s physician liaison.