Care Center Data

CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.

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Summary
  • The CF Foundation's Patient Registry collects information on the health status of children and adults with cystic fibrosis who receive care at CF Foundation-accredited care centers. 
  • This information provides critical data to help care teams and researchers identify new health trends, recognize the most important treatments, design CF clinical trials, and develop clinical care practice guidelines.
  • Please remember that numbers tell only part of the story. Data alone cannot tell you which care center or care team is the best fit for you or your child.

Making CF Patient Registry Data Transparent

The CF Foundation's Patient Registry collects information on the health status of children and adults with cystic fibrosis who receive care at CF Foundation-accredited care centers. This information provides critical data to help care teams and researchers identify new health trends, recognize the most important treatments, design CF clinical trials and develop clinical care practice guidelines.

Each year, the Foundation processes the Registry data to produce several types of reports. One of these is a detailed, center-specific report that allows care center staff to compare health outcomes and other important aspects of care in their center with similar data of all other centers.

Current data on key measures at each center and for the past five years are available to all users of cff.org.

The CF Foundation also publishes annual data reports that summarize key Patient Registry findings across the care center network.

How to Use the Care Center Data

Information from the CF Patient Registry is provided to inform and inspire improvement in the quality of CF care, not to rate or judge care centers against one another.

Please remember that numbers tell only part of the story. Data alone cannot tell you which care center or care team is the best fit for you or your child.

We encourage you to use this data to partner with your care center and find ways to make your or your child's health and the quality of your care the best it can be.

The 2020 data were reported to the CF Foundation's Patient Registry for the period of January 1, 2020, through December 31, 2020.

Access the Care Center Data

Care center data from the Patient Registry is available through the Care Center Finder.

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