Median Survival Age Rises to 36.8 in USA
01/May/2006
We are pleased to report that the median survival age of people with Cystic Fibrosis in the United States has risen to 36.8 years--up from 35.1 in 2004!
For decades, the Cystic Fibrosis Foundation (USA) has tracked the health and longevity of patients treated through its care center network. Caregivers at these centers collect vital statistics about the health of CF patients, which skilled statisticians then analyze and publish in the annual CF Foundation Patient Registry Report.
As an interesting perspective, in the last four years alone, we have added more than five years to the median survival age of CF patients. Today’s trend of continuous improvement suggests that we are getting closer to reaching the goal of curing this disease.
We attribute the improvement in both the length and quality of life to the fact that there are now more CF therapies than ever before and even more now in development. In addition, the standardization of care and the implementation of “best practices” throughout our care center network also are having an impact.
Thank you for your dedication to the CF community. What you are doing in the lab and in the clinic is making a difference. Together, we are adding tomorrows every day to the lives of those with CF.
Sincerely,
Robert J. Beall, Ph.D., President and CEO
Preston W. Campbell, III, M.D., Executive Vice President for Medical Affairs
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Message from Terry Stewart, CEO, Cystic Fibrosis Australia
As you will note from the Cystic Fibrosis Foundation article that they have been tracking health and longevity of CF patients for decades. These are the benefits of having a long standing data registry.
Cystic Fibrosis Australia is now heading towards these benefits and its advantages of having a very viable and comprehensive National Data Registry. As the Aust. Data Registry's fifth annual report is released, this also takes into new ground as it now allows for longitudinal studies to be carried out. This along with the Data Registry going to a web base system beginning in May 2006 will further enhance opportunities both within research and clinical outcomes and standards.
All CF people gain from having a good Data Registry and CFA thanks all patients and clinical staff for their on going support.
