USF Health pediatric pulmonology has met the extensive requirements to become a cystic fibrosis core center, a designation that offers funding opportunities for research and drug development and access to large data sets related to the clinical care of patients with cystic fibrosis.
“We have an extremely committed team and with the support provided by the CF Foundation and our USF institution, our patients are living happy and healthier lives,” said Marisa Couluris, DO, division chief of USF Health pediatric pulmonology and associate professor for USF Health Morsani College of Medicine. “With new programs involving transition plans for pediatric to adult centers, lung transplant research, mental health support and real time research guidelines only possible with registry data which all the centers provide, patients are living longer, and healthier lives.”
USF Health pediatric pulmonary’s Jason C. Walsh, FNP, Yanerys Colon-Cores, MD FAAP, and Marisa Couluris, DO.
The Cystic Fibrosis Foundation has accredited more than 130 CF care centers nationwide and about 15 of those are in Florida. According to the Cystic Fibrosis Foundation, “the CF Foundation’s care center network combines clinical research with medical care best practices and has been cited by the National Institutes of Health as a model of effective and efficient health care delivery for a chronic disease.”
The requirements to become a core center starts with the care inside the center itself and takes into account the number of patients seen and a review of the registry or clinical data made up of those patients. Then the CF Foundation considers the institution’s location to ensure it has supportive teaching and resources to initiate quality programs, can meet research requirements, and has the multidisciplinary team in place, including a hospital supportive program. Tampa General Hospital’s Adult Cystic Fibrosis Program is also certified and supported by the CF Foundation and TGH’s Lung Transplant Program specializes in lung transplants for adult patients with cystic fibrosis. After application review, the CF Foundation conducted a site visit with two leading experts in the field to review USF Health’s pediatric pulmonology services and support efforts to ensure that high-quality specialized care is provided to people living with CF.
The benefit of becoming accredited by the CF Foundation is the funding, which is used to support research and drug development and the capture and collection of data of the clinical care of patients. This work helps to promote individualized treatment plans and ensures high-quality, specialized care by USF Health’s multidisciplinary team. USF Health pediatric pulmonology’s team is made up of health care providers, nursing staff, registered dieticians, social workers, respiratory therapists and research and clinic coordinator support. Everyone on the team works together for the same goal, to find a cure and provide all people with this disease the opportunity to lead full productive lives, Dr. Couluris said. It was only 70 years ago that a child living with CF rarely lived long enough to attend elementary school and now, with the advancements in specialized CF care, that child can fulfill their dreams of having a career and their own families.
“I have been caring for patients with CF at USF Health for over 15 years and once I became the division chief, it was the goal of our team to become a core center,” Dr. Couluris said. “With the support of our institution both at USF and TGH, we were able to build the team to provide the degree of high-quality, specialized care needed to be a core center. Now the next goal is to advance the research in CF care to find that cure. And then I can retire.”
What is Cystic Fibrosis?
Cystic Fibrosis is a rare genetic disease that causes the mucus in organs, such as the lungs, pancreas and liver, to become thick and sticky. The mucus can clog the airways and trap germs, as well as cause malnutrition and liver disease. According to the Cystic Fibrosis Foundation Patient Registry, CF is found in more than 30,000 people in the U.S. and more than 70,000 worldwide. Thanks to the advocacy of the CF Foundation, every newborn nationwide is now tested for CF. Cystic Fibrosis is a progressive disease, so with early detection and
treatment, CF survivors have a longer life expectancy and a better quality of life. There is no cure for CF, only significant progress in the treatment of the disease.
What are the symptoms of Cystic Fibrosis?
The type and severity of symptoms are different from person to person. People with CF can have a variety of the following:
- Very salty-tasting skin
- Persistent coughing, at times with phlegm
- Frequent lung infections, including pneumonia or bronchitis
- Wheezing or shortness of breath
- Poor growth or weight gain in spite of a good appetite
- Frequent greasy, bulky stools or difficulty with bowel movements
- Male infertility
