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Primary Ciliary Dyskinesia and Overlapping Syndromes

Thursday, September 30, 2010 - Friday, October 01, 2010
Eric P. Newman Education Center, Washington University Medical Center, St. Louis, MO

The four main objectives of this international conference were to (1) optimize diagnosis of primary ciliary dyskinesia (PCD) through standardization of diagnostic testing, (2) define PCD genes and gene mutations through global networking, (3) optimize clinical care of PCD patients and develop clinical research networks to test therapies through clinical trials, and (4) refine nomenclature for ciliopathies and define overlapping features. Another goal was to establish PCD centers of excellence that will participate in research as well as clinical care. Given the lack of evidence in best clinical care, establishing a clinical trial network is urgently needed. Good medical management in a specialized PCD diagnostic and treatment center will probably provide the PCD patient with the best chance for preservation of lung function over time.

Contact: Dr. Susan Banks-Schlegel (301) 435-0202

Co-funding Institute(s):
National Heart, Lung, and Blood Institute
Office of Rare Diseases Research