New York Times Says Cystic Fibrosis Foundation is Model for Other Chronic Diseases

December 22, 2009

The Cystic Fibrosis Foundation is recognized in the New York Times today as a model because of its successful electronic patient registry – a nationwide collection of patient health data that drives improvement in cystic fibrosis care.

Now, the idea of creating patient registries is being widely copied. Chronic disease groups such as Parkinson’s are using the Foundation’s registry as a model, according to the story. In addition, the National Institutes of Health is promoting a linked network of registries for rare diseases.

The Foundation analyzes health data from 24,000 patients at its 110 care centers and shares the registry report with the public, physicians, care providers, patients and families. The data helps identify best practices and areas for improvement, providing care givers the firepower they need to make changes and improve care.

Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation, notes in the story that registries are incredibly important in recruiting participants for research on diseases that affect few patients.

This year the Foundation was honored for remarkable leadership in improving care for cystic fibrosis by the National Committee for Quality Assurance (NCQA). The outlook for people with CF improves every year. The median predicted age of survival for the disease has doubled in the past 25 years.

Read the full New York Times story.