The CF Foundation recently released their annual reports drawn from the analysis of the data collected in the CF Patient Registry. There is a lot of information – and hope – presented in the reports.
Here’s an excerpt from the CFF announcement:
The ultimate goal of the Cystic Fibrosis Foundation’s Patient Registry is to improve health care for all people with cystic fibrosis. The Patient Registry Reports provide the CF community with an annual snapshot of the care received and health outcomes within the CF Foundation Care Center Network.
The Registry was created in 1966 to collect data on the health outcomes, clinical care and demographic characteristics of people with CF who receive care at CF Foundation-accredited care centers.
This information is used to create CF care guidelines, assist care teams providing care to people with CF and guide quality improvement initiatives at care centers. Researchers use the Registry to study CF treatments and outcomes and to design CF clinical trials.
The new reports are based on the analysis of the data entered in the registry in 2014. One report provides highlights of the analysis with several informative graphics while the other provides more details of the analysis and the conclusions drawn therefrom. A review of the highlights might help you focus on the portions of the detailed report of most interest to you.
Summary report: Highlights-of-the-2014-Patient-Registry-Data
Detail report: 2014_CFF _Annual_Data_Report_to_the_Center_Directors