Patient Registry Annual Data Report

  • Cystic Fibrosis Foundation
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Abstract

To the CF Community and Friends, We are proud to report that, based on the most recent data in the CF Foundation's Patient Registry, the outlook for people with cystic fibrosis has continued to improve. Each year, the Cystic Fibrosis Foundation collects information on the health status of the more than 26,000 people with CF receiving care at Foundation-accredited care centers nationwide. The CF Foundation's Patient Registry Annual Data Report shares this information with the wider community, highlighting progress, trends and areas for improvement in the treatment of cystic fibrosis. Information collected in 2009 and contained in this report shows promise in many areas, including: • Better overall lung function for both adults and children • Increased body mass index (BMI) for adults and BMI percentile for children • Growing numbers of adults with CF 18 years of age and over • Greater numbers of infants diagnosed at birth with CF, thanks to newborn screening nationwide These gains are the result of the strong partnerships among those with CF, families and health care professionals. We applaud the contributions of the many people with CF and families who have become actively involved by serving as members of advisory boards and quality improvement teams or in other critical roles at their care centers. These strong partnerships will remain crucial to achieving the best possible health outcomes for people with CF. We encourage you and your CF care center to use this report—and other resources available on www.cff.org—as a tool for discussion about ways to improve the quality of care at your care center.

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APA

Cystic Fibrosis Foundation. (2015). Patient Registry Annual Data Report. Lung. Retrieved from http://www.cff.org/UploadedFiles/research/ClinicalResearch/Patient-Registry-Report-2009.pdf

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