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Care Center Data

The CF Foundation reports
People with CF and their families are full members of the care team.
The CF team includes the person with CF, their family and CF healthcare professionals.
care center data as part of its Quality Improvement (QI) initiative, a program designed to increase, promote and share improvements in care throughout the cystic fibrosis care center network.

The Foundation also trains care centers in QI and provides tools to improve care and build stronger partnerships between people with CF, families and their care center team.

The CF quality improvement work is based on seven goals to improve CF care. They are:

  1. People with CF and their families will be full members of the care team.

  2. Children, adolescents and adults with CF will have normal growth and nutrition.

  3. People with CF will receive appropriate therapies for maintaining lung function and reducing acute episodes of infection. Pulmonary exacerbations will be detected early and treated aggressively to return them to previous levels of lung function.

  4. People with CF, their families and CF health care professionals will be well informed and active partners in reducing acquisition of respiratory pathogens, particularly Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia (B. cepacia) complex.

  5. People with CF will be screened and managed aggressively for complications of the disease, particularly CF-related diabetes (CFRD).

  6. People with CF and their families will be well supported by their CF health care professionals when facing decisions about transplantation and end-of-life care.

  7. People with CF and their families will have access to appropriate therapies, treatments and supports regardless of race, age, education or ability to pay.

For More Information 

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

Information from the patient registry is provided to inform and inspire quality improvement, not to rate or judge care centers against one another.

We encourage you to use this data to work together and find ways to make your or your child’s health and the quality of your care the best it can be.

These data were reported to the CF Foundation's Patient Registry for the period of January 1, 2012 through December 31, 2012.

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Updated: 3/19/2014

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