Nearly 4,000 leading cystic fibrosis scientists and health care professionals gathered in Baltimore Oct. 21–23 to exchange ideas and discuss the latest developments in cystic fibrosis research and care.
The 24th annual North American Cystic Fibrosis Conference (NACFC) included presentations on the core defect in CF, the power of patient and family involvement in improving care and advancements in inhaled antibiotics.
The most widely attended sessions of the conference were the plenaries, which included a presentation on maintenance of airway surface liquid and an overview of the CF Foundation’s Quality Improvement Program.
Scroll down to read summaries and watch full-length videos of select plenary sessions.
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Plenary Session 1: Pipeline: Airway Surface Liquid Modulation
Speaker: Eric J. Sorscher, M.D.
Eric Sorscher, M.D., professor of medicine and director of the CF Research Center at the University of Alabama at Birmingham, spoke on the latest research into how CF affects the surface liquid of the airways.
Keeping the airways clear is key to reducing lung damage in CF. The healthy airway uses cilia, hair-like projections bathed in a thin layer of liquid on top of cells, to sweep bacteria up and out of the lung. CF airways, however, are hampered by too little fluid and mucus that is abnormally thick and sticky; as a result, the cilia cannot sweep away invading bacteria.
Dr. Sorscher described exciting new techniques and models that are helping scientists better understand airway surface liquid and the defects that may be significant in the disease process.
With the help of an animated video, Sorscher showed the effect that various mutations in the CF gene may have on airway surface liquid height. Understanding these differences has led CF researchers to work on therapeutics that target specific mutations.
Sorscher described the latest results from clinical trials using these potential new therapies, including drugs designed to restore fluid to the CF airway by treating it with a salt water solution or by turning on different proteins in the lung to pull water onto the surface of the cells.
Plenary Session 3: Transforming CF Health Care: Partnerships for Life
Speakers: Bruce Marshall, M.D., and Kathy Sabadosa, M.P.H.
The final plenary of the 2010 NACFC focused on the rich history of the Cystic Fibrosis Foundation’s Quality Improvement Program, an ongoing collaborative effort to advance quality CF care across the country.
Bruce Marshall, M.D., vice president of clinical affairs at the Cystic Fibrosis Foundation, described the early discussions and initiatives that laid the framework for the QI activities and knowledge-sharing in the CF community today.
In 1999, close examination of the patient registry annual data report showed substantial variation among accredited care centers in outcomes as critical as lung function, nutrition and even survival. From an initial step of distributing the data among care centers to demonstrate that some centers were achieving better outcomes — and that it was possible for others to improve — the CF Foundation moved its QI work forward through the Learning and Leadership Collaboratives and a formal benchmarking initiative to capture best practices at CF care centers, among other strategies.
Kathy Sabadosa, M.P.H., project manager of the Quality Improvement Initiative at the CF Foundation, shared her perspective as the parent of a child with CF. Describing how, at an especially tough time, she first turned to the CF Foundation for help finding the best physician for her son Jack, Sabadosa recalled, “They did not shy away from parents like me who had tough challenges and hard questions.”
The two speakers were joined by guest Donald Berwick, M.D., administrator for the Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services.
Dr. Berwick praised the methods that the CF Foundation has used to advance its Quality Improvement Program, pointing out that the CF community did not have the luxury of avoiding fear — every attempt had to be made to improve care for all who have CF. He described the CF Foundation as second to none in translating research into new drugs, and said the gains that have been made in CF health outcomes were “stunning.”
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