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Research Coordinator Liz Hartigan talks about the need for clinical trial volunteers to help advance CF treatments. Watch video now.
Research Coordinator Liz Hartigan talks about the need for clinical trial volunteers to help advance CF treatments.

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Care Center Data

People with CF and their families are full members of the care team.
People with CF and their families are full members of the
care team.
The reporting of care center data is part of a comprehensive CF Foundation quality improvement (QI) initiative designed to speed up the rate of improvement in care throughout the cystic fibrosis care center network.

The initiative includes training of care center staff in QI, providing tools to identify and implement best practices, and building stronger partnerships between people with CF, families and their care center.

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

  • People with CF and their families are full members of the care team;
  • People with CF will attain normal growth and nutrition status;
  • People with CF will receive early diagnosis of infections and respiratory therapies that keep lung function steady;
  • To decrease the spread of germs between people with CF;
  • To prevent complications and/or to diagnose and treat them early;
  • To provide care regardless of race, age, education or insurance coverage; and
  • To support all transplantation and end-of-life care decisions.

To learn more about the QI initiative and how care center data is leading to action and strengthening the partnership between people with CF, their families and CF care centers there are two archived Web casts: “Quality CF Care is More Than the Numbers” and “One Team’s Story: Raising the Bar for CF Care.” Also, visit the Quality Improvement Initiative section of this web site.

Please remember that the 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. Take this opportunity to work together to 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, 2007 through December 31, 2007.

Access Care Center Data

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Updated 04/28/09

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