Cystic Fibrosis Patient Registry (Pediatrics)
Participation in the Cystic Fibrosis Patient Registry (Pediatrics)
Protocol ID
Protocol Description
This project is an ongoing data collection effort sponsored by the Cystic Fibrosis Foundation, known as the Patient Registry. The goal of the Patient Registry is to collect data on individuals with cystic fibrosis (CF) to better understand the illness and ultimately improve the care and survival of those with CF.
Each year, the data in the Patient Registry are 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.
Eligibility Criteria
People with cystic fribrosis (CF)
Primary Investigator(s)
- Joan DeCelie Germana, MD