Cystic Fibrosis Center Program 2016-2017

1.Background: The Cystic Fibrosis (CF) Registry was established in 1966 as a meansto monitor important trends in the CF population and to improve care and treatment and report survival statistics. Information on over 20,000 patients with CF in the USA is collected annually from all CF Foundation accredited CF Care, Teaching and Research Centers. Data from this registry has been essential towards the care and progress that has been seen in CF and the improved survival over the years. The University of Kentucky CF Center has participated in the Registry since its inception in the 60’s. All cystic fibrosis patients seen for at our Center are invited to participate. Written consent is obtained for the patients or caregivers before any information is entered into the registy. The patient information is collected electronically, on a secure website that is managed by the CF Foundation. 2.Objectives: The CF Patient Registry is used by both clinicians and researchers tobetter understand CF trends and to improve care of individuals with CF. Each year, the data in the Registry is analyzed and an annual report of CF health trends is created. Using this information, CF clinicians can address quality improvement initiatives, and examine dynamic health care issues, including nutritional status, infection control, pulmonary treatment and other issues rapidly and effectively. The Registry also has played an important role in directing clinical care and in the design of clinical research studies. Researchers may request information from the CF Registry (without individual patient identifiers) through the CF Registry Committee. This committee evaluates the scientific merit of data requests from respected scholars who specialize in treating people with CF.