Specialized Centers

Cystic Fibrosis Center

Accredited by the Cystic Fibrosis Foundation (CFF), we are a premiere Cystic Fibrosis Center serving upstate New York. Our Center adheres to the stringent standards set forth by the CF Foundation using approved guidelines resulting in an appropriate management of patients with CF. Our sweat test laboratory uses only CFF-approved techniques, which result in accurate diagnoses and quality ongoing care of patients of all ages.

At the Golisano Children's Hospital, we incorporate a team approach. Our pulmonologists are supported by a core team of dieticians, social workers, nurses, and respiratory therapists. We also have available the consultative expertise of gastroenterologists, surgeons, psychiatrists, radiologists, and other specialists needed in the evaluation of new patients and the ongoing management of CF.

Our Services

The Cystic Fibrosis Center provides the following services:

• Official New York State Newborn Screening Program follow-up site. In the state of New York, a mandatory blood test is performed on all newborns as an initial screening for cystic fibrosis. If a baby's results are positive, the child is referred to our Center for more comprehensive diagnostic testing, including sweat testing and genetic counseling.

  What is Cystic Fibrosis? Cystic fibrosis (CF) is a chronic condition in children and adults. It most often affects the lungs and digestive system of the body. Children with CF may have chronic lung infections and/or poor digestion of their food. Symptoms which are sometimes seen in CF but are also common in other illnesses may include: A chronic cough Frequent infections in the lungs Wheezing/asthma Nasal polyps Difficulty gaining weight Salty taste of the skin More Information on Cystic Fibrosis

  
  
  
• Comprehensive evaluation of each child. When a child is referred to our Center, he/she receives a complete evaluation of his/her medical needs. A complete history, physical exam, and appropriate diagnostic studies are performed to determine if CF is present. If so, the patient will be followed on a regular basis to monitor their growth, any problems, response to treatment or any other needs. Follow-up visits are typically scheduled every three months. Your child's visit may also include:
  
  • Meeting with the Nutritionist and/or Social Worker;
  • Laboratory testing, including sputum culture or throat swabs to identify bacteria;
  • Annual blood work and chest x-rays;
  • Pulmonary function testing.
    
    
• On-going communication with primary care physicians. Reports on clinical evaluations and recommendations for treatment are provided to your primary care provider. These include results from our microbiology lab, which performs an extensive evaluation of cultures to identify organisms found in CF patients.
  
  
• Other support services. Support services are in place to assist patients and families in identifying resources available. We also provide education about the disorder, and train patients and their families in self-care.

More about the Cystic Fibrosis Center

FAQs about the Cystic Fibrosis Center