For Immediate Release

Cystic Fibrosis Foundation Reports Upward Trend for Key Health Outcomes

New Patient Data Posted Online Shows Improvements Across Care Center Network

January 28, 2008

The Cystic Fibrosis Foundation reported today that key indicators of health for people with cystic fibrosis—including lung function and nutritional status—are rising nationwide across its accredited care center network.

In fact, the outlook for people with CF continues to improve steadily each year—and this progress is accelerating due to quality improvement programs spearheaded by the CF Foundation. The National Institutes of Health has recognized the Foundation’s care center network as a model for delivering care for a chronic disease.

“Across the country, we are seeing great care for cystic fibrosis get even better,” said Bruce C. Marshall, M.D., vice president of clinical affairs for the CF Foundation, who leads the quality improvement initiative.

The new data is posted on the CF Foundation’s Web site (www.cff.org) under “Care Center Network.” It includes four measures vital for the health of people with CF: lung function, nutritional status (body mass index), screening for CF-related diabetes, and adherence to recommended outpatient clinic visits and tests.

In December 2006, the CF Foundation was one of the first organizations of its kind to publicly release health outcomes data in an effort to accelerate the rate of improvement in care. Going forward, data will be updated annually, allowing people with CF to track progress at their individual care centers.

“It’s rewarding to see our investments in quality improvement yielding results, and at the same time, complementing our intensive efforts to develop new therapies to raise the bar even higher,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.

The 2006 data shows gains across the board. Highlights include:

  • Significant improvement in the nutritional status of children, ranked by body mass index (BMI). In fact, median BMI rose from the 38th percentile to the 46th percentile between 1999 and 2006 – bringing these children to nearly normal growth levels.

  • Enhanced improvement in lung function for adults and children between 1999 and 2006. Improved lung function leads to added years of life.

  • Median predicted age of survival has doubled in the last 25 years. It rose eight years between 1999 and 2006 – from age 29 to age 37.

"I am delighted, and deeply impressed, by the progress and courage of the CF Foundation. This organization is an important model for many others engaged in quality improvement," said Donald Berwick, M.D., president and CEO of the Institute for Healthcare Improvement, an independent not-for-profit organization helping to lead the improvement of health care throughout the world.

The data provided online comes from the CF Foundation’s Patient Registry, a database of health-related information from 24,000 people with CF who have agreed to have their data entered for research and quality improvement purposes.

About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the leading organization in the United States devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, Md., the Foundation has more than 80 chapters and branch offices throughout the country and supports and accredits a nationwide network of more than 115 care centers, which provide vital treatments and other CF resources to patients and families. For more information, visit www.cff.org.

Media Contact:

  • Laurie Fink, Director of Media Relations, (301) 841-2602