Participation in the Cystic Fibrosis Patient Registry

Description

The CF Patient Registry is used by both clinicians and researchers to better understand CF and to improve care of individuals with CF. Each year, the data in the Patient 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/or metabolic issues rapidly and effectively. The Patient 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 Patient Registry through the CF Registry committee. This committee evaluates the scientific merit of data requests for epidemiological studies often from respected scholars who specialize in treating people with CF. Approximately 22,000 patients who have CF across the U.S. participate in the Patient Registry. At this institution, Indiana University Adult Cystic Fibrosis Center, around 500 patients are expected to be enrolled and we expect growth of about 10 new patients every year.

Details