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Accredited Cystic Fibrosis Center Offers Patients the Latest Treatments
Cystic Fibrosis (CF) is the most common serious genetic disease among Caucasian and Northern European people and is also quite common among Hispanics and African-Americans. Most children are diagnosed before their first birthday, but some patients are not diagnosed until late adolescence/early adulthood or even older. Common signs of CF are unexplained failure to thrive and chronic stomach pain or diarrhea. Some infants are born with a bowel obstruction and are diagnosed as newborns. Any child with unexplained failure to thrive or chronic respiratory infections should be considered for testing. The gold standard of diagnosis is called the sweat test, which looks for excessive chloride in a child's sweat. A diagnosis may also be suggested through genetic testing. "It is very important that the diagnostic tests be done in a certified laboratory in a Cystic Fibrosis Center," say Dr. Mark Pian, director of the UCSD/Rady Children's Hospital Cystic Fibrosis Center. "We are the only center in San Diego and Imperial counties that has been accredited by the national Cystic Fibrosis Foundation." Dr. Pian said that regular care in an accredited center improves the length and quality of life for cystic fibrosis patients and is the accepted standard of care. The Center treats about 220 to 250 patients a year — half of them children. The Cystic Fibrosis Clinic staff uses a team approach to treat patients. The team includes respiratory therapists, dietitians, social workers, nurse specialists and pulmonary medicine physicians. The UCSD/RadyChildren's Hospital Cystic Fibrosis Center is one of the first centers to receive formal training in quality improvement provided by the Cystic Fibrosis Foundation (CFF). Dr. Pian serves as a quality improvement coach to help other CFF accredited centers with their quality improvement initiatives. As a member of the Cystic Fibrosis Foundation's Therapeutic Development Network, the Center also conducts clinical trials of new drugs for cystic fibrosis. To schedule an appointment for the Cystic Fibrosis Clinic, call (800) 543-7456.
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