Offered by: Nemours Children's
Location: Delaware Valley and Jacksonville, Orlando, Pensacola in Florida
Cystic Fibrosis Foundation Patient Registry
What is the trial about?
This study reviews treatment and outcomes data for patients with Cystic fibrosis (CF), Cystic fibrosis transmembrane conductance regulator (CFTR) related metabolic disorder, and CF related metabolic syndrome
Who can participate?
All patients who are followed by a CF care center can be in this Registry.
What is involved?
The goals of the Patient Registry are to collect data on individuals with cystic fibrosis to better understand the illness and ultimately improve the care and survival of those with CF. The CF Patient Registry was established in 1966 as a means to monitor important trends in cystic fibrosis and accomplish these goals. The CF Patient Registry is used by both clinicians and researchers to better understand CF. It has also been used to improve care of individuals with CF. Care team members use the registry data in a variety of ways. For instance, they can search the registry to determine if a patient is due for routine testing. They can also look at the data to see who might be eligible for a new study. On the national level, the data in the Patient Registry is analyzed to create an annual report of CF health trends. Finally, researchers may request information from the CF Patient Registry through the CF Registry Committee. This committee evaluates the scientific merit of data requests for research studies and then searches that database for the information the researcher is looking for.