Cystic Fibrosis Foundation Patient Registry
More than 40 years ago, the Cystic Fibrosis Foundation started a patient registry to track the health of patients with cystic fibrosis (CF) across the United States. Today, information from more than 25,000 patients who receive care at a CF Foundation-accredited care center is collected and added to the patient registry database annually. This information has been used to identify trends, develop new drugs and provide opportunities for improvement in CF care through the network of CFF-accredited Care Centers. Each year the national registry data is published and care centers receive an analysis of their center outcomes.
The Cystic Fibrosis Foundation and its network of care centers have partnered to use quality improvement methods to improve patient outcomes. Read the Cystic Fibrosis Foundation's Patient Registry Annual Data Report for 2012.