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We are here to help people with CF get the insurance coverage they need. Hear how the Foundation helped the Cox family.

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Patient Registry Reports

The Cystic Fibrosis Foundation Patient Registry was created nearly 50 years ago to collect information on the health outcomes, clinical care and demographic characteristics of people with CF who receive care at Foundation-accredited care centers.

This information is used to create CF care guidelines, assist care teams providing care to individuals with CF and guide quality improvement initiatives. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.

Each year, the Foundation publishes two Patient Registry data reports:

2013 Patient Registry Report

For those interested in learning about CF, the Patient Registry Annual Data Report provides a summary of key data findings, including demographic information and health outcomes of individuals who agreed to share their data in the reporting year.

2013 Patient Registry Center Director Report

The Patient Registry Annual Data Report to the Center Directors provides a more comprehensive look at the Registry data, with detailed information on a wide range of topics, including diagnosis, CF care guidelines, lung function, microbiology, nutrition, gastrointestinal and pulmonary therapies and transplantation. The report also measures the variation in clinical practices and health outcomes across the CF care center network to guide care teams in their work with people with CF and families.

Data from more than 28,000 people with CF are included in the Foundation’s most recent Patient Registry annual reports (2013).

Please consider completing the survey to provide feedback about the reports and help us continue to improve them. We appreciate your interest in the Patient Registry reports and value your time and opinion.

Updated: 1/29/2015

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.