The Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital diagnoses and treats newborns to young adults with cystic fibrosis.
Update: We are now offering telemedicine appointments with the Cystic Fibrosis program, for the health and safety of our patients while coronavirus (COVID-19) is present in Florida. For appointment scheduling, please call 727-767-3995.
The Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital consists of highly qualified physicians and medical staff committed to improving the lives of patients with cystic fibrosis (CF). We provide treatment, education and dietary services for both inpatients and outpatients and support patients from initial diagnosis to the transition to adult care. Our center also provides access to the latest research discoveries, clinical research trials and evidence-based clinical management. We understand that early diagnosis of CF can prevent serious, lifelong problems. That’s why our team has access to newborn screenings that show any signs of CF and can provide immediate care and education to patients and their families.
Our program is nationally accredited by the Cystic Fibrosis Foundation as a Cystic Fibrosis Care Center. The program is also a Cystic Fibrosis Foundation-designated Therapeutic Development Center and specializes in clinical trials to evaluate the safety and efficacy of new therapies.
In addition to our comprehensive care, we have access to pediatric specialists and subspecialists throughout our hospital and can provide a seamless transition for patients who need additional specialty care beyond our services.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic disease that causes persistent lung infections and limits the ability to breathe over time. It affects the body by producing thick mucus in varying organ systems which can cause chronic sinus tract infections, respiratory infections, malabsorption disorders, increased metabolic demand, pancreatic dysfunction and potential sterility in males. There are more than 2,100 known genetic mutations that cause CF, with the most common being F508del.
A child inherits CF when one parent is a carrier and then passes the defective gene to the child. If both parents are carriers, there is a 25 percent chance (1 in 4) that a child will have CF. There is a 50 percent chance (2 in 4) that the child will carry one copy of a gene, and a 25 percent chance (1 in 4) that the child will not have CF or be a carrier.
The symptoms and severity of CF vary. If more severe, CF can cause serious lung and digestive problems. If the disease is mild, symptoms may not show up until the teen or adult years.
Resources
Cystic Fibrosis Foundation
Get more information on CF, its diagnosis, what to expect and more.
Contact Us
Give us a call
Locations
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Johns Hopkins All Children's Hospital Main Campus St. Petersburg
2nd Floor Specialty Care Clinic
601 5th Street South
St. Petersburg, FL 33701
Hours by appointment only:
Every Thursday
9 a.m. - 4 p.m.
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Johns Hopkins All Children's Outpatient Care Center Sarasota
5881 Rand Blvd
Sarasota, Fl 34238
Hours by appointment only:
Fourth Tuesday of every month
8:30 a.m. - 3:30 p.m.
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Johns Hopkins All Children's Outpatient Care Center Tampa
12220 Bruce B Downs Boulevard
Tampa, FL 33612
Hours by appointment only:
First or third Tuesday of every month
8:30 a.m. - 3:30 p.m.
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Adult Cystic Fibrosis Affiliate: Tampa General Hospital/USF Health Center for Advanced Lung Disease
Team:
Dr. Kapilkumar Patel
Dr. Monvasi Pachinburavan
Suzanne Roberson, BSN CCRP
Adult CF Coordinator/Research Nurse
Office phone: 813-844-7179
Read news stories about cystic fibrosis:
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Thankful For Kelsie
8-year-old Kelsie was diagnosed as a newborn with cystic fibrosis. Johns Hopkins All Children’s Hospital has been a partner in Kelsie’s life ever since, with highly specialized care from the hospital’s Cystic Fibrosis Center.
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New Drug Trikafta Boosts CF Patients
Johns Hopkins All Children’s Hospital is now offering a new drug therapy to cystic fibrosis patients that will help an estimated 90% of patients.
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Taking A Step Back From… Five Feet Apart
We asked Deanna Green, M.D., director of Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital, and 18-year-old Lynsey, a patient who has cystic fibrosis, if the recently debuted feature film Five Feet Apart got the facts right.
