Background
Cystic fibrosis (CF) is a life-threatening genetic disease that causes mucus to build up and clog some organs in the body. This leads to problems in the lungs and digestive system. Many people with CF have lung infections and inflammation (swelling). These slowly damage the lungs and reduce their ability to provide oxygen to the body. Digestive problems prevent people with CF from absorbing food, making it difficult for them to grow normally and keep a healthy body weight. About one in 3500 children in the United States is born with CF each year. The disease affects all racial and ethnic groups. However, it is more common among Caucasians. An estimated 30,000 people in the United States have the disease.
Why are we doing this study?
The goal of the Patient Registry is to collect data on individuals with CF to better understand the illness and ultimately improve the care and survival of patients with CF. The Patient Registry was established in 1966 as a means to monitor important trends in CF and accomplish these goals.
The CF Patient Registry is used by both clinicians and researchers to better understand this disease. The registry 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 requested information.
What have we learned so far?
The Cystic Fibrosis Foundation Patient Registry continues to collect data on treatment and outcomes of the individuals who are participating. Data is analyzed annually, and a report is made available on the Cystic Fibrosis Foundation website. The annual report is usually available about 12 months after the close of the calendar year.