The CF team includes the person with CF, their family and CF healthcare professionals. |
The reporting of care center data is part the CF Foundation's quality improvement (QI) initiative designed to speed up the rate of improvement in care throughout the cystic fibrosis care center network.
The work includes training of the CF team in QI, providing tools to identify and implement best practices, and building stronger partnerships between people with CF, families and their healthcare professional.
The CF quality improvement work is based on seven goals to improve CF care. They are:
- People with CF and their families will be full members of the care team.
- Children, adolescents and adults with CF will have normal growth and nutrition.
- 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.
- 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 (cepacia) complex.
- People with CF will be screened and managed aggressively for complications of the disease, particularly CF-related diabetes (CFRD).
- 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.
- People with CF and their families will have access to appropriate therapies, treatments and supports regardless of race, age, education or ability to pay.
To learn more about how data from the CF Foundation's Patient Registry is leading to action and strengthening the partnership between people with CF, their families and CF care centers, watch the CF Education Day Webcasts about how to Partner for CF Care. Also, visit the Quality Improvement Initiative section of this website. You can also learn how to partner with other members in your CF team by watching the "Partnership for Care" webcast series.
Please remember that numbers tell only part of the story. This information is provided to educate and inspire action, rather than to pass judgment.
By sharing this data, it is hoped that the partnership between you and your care center will be strengthened. We encourage you to take this opportunity to work together and find ways to make your or your child’s health and your care center the best it can be.
These data were reported to the CF Foundation's Patient Registry for the period of January 1, 2009 through December 31, 2009.
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Updated 01/26/12
