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Foundation's Bold Step Results in Rise of CF Health Outcomes


Julianna Harding flashes a smile during a routine clinic visit. Specific data collected during these visits is recorded in the Patient Registry.

According to the CF Foundation's most recent Patient Registry data, key health indicators for people with CF, including lung function and nutritional status, are rising nationwide.  One important contributor to these improvements is the Foundation's commitment to quality improvement and information-sharing.

In late 2006, the Foundation took an important step in its quality improvement efforts by publicly releasing medical outcomes data for all Foundation-supported care centers. Available on cff.org, the data offers patients and families the chance to learn about their center's health outcomes and to compare them with those of other care centers nationwide.

Such transparency has resulted in better informed patients, families and care teams and a greater willingness of individual care centers to look for ways to improve their practices.  Both have led to better overall health outcomes.

"We are thrilled that CF health outcomes are steadily improving," said Bruce C. Marshall, M.D., vice president of clinical affairs for the Foundation.  "Making the data public offers people the chance to learn more, but it also inspires action.  We are committed to strengthening the partnership between patients and care center staff and promoting ways to continually improve patient health and quality of care.  The data help us do both."

The online data is extracted from the Patient Registry, a database of health-related information from approximately 24,000 people with CF who receive care through the Foundation's Care Center Network. The data includes four measures vital for the health of those with CF: lung function, nutritional status, screening for CF-related diabetes and people with CF who have the recommended number of clinic visits and tests. 

The 2006 data shows progress across all outcome measures.  For example, there were significant improvements in the nutritional status of children, as ranked by Body Mass Index (BMI).  The median BMI rose eight percentile points from 1999 to 2006, a move that indicates that these children are within range of normal growth levels.  Lung function for both adults and children also significantly increased.  And, the median predicted age of survival, which has more than doubled in the last 25 years, increased by 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 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 healthcare throughout the world.