Cystic Fibrosis Lung Disease
It is our pleasure to introduce cystic fibrosis, which is the focus of this installment of "Lung Disease Week at the ATS." This program allows us to discuss the clinical manifestations and complications of cystic fibrosis and highlight recent advances to treat this progressive lung disease.
Cystic fibrosis is an inherited disease, affecting 30,000 children and adults in the United States. An autosomal recessive defect occurring in approximately 1 in 3500 live births based on neonatal screening data, the median predicted life expectancy has gradually risen, now approaching 38 years in the United States.
Established in 1955, the Cystic Fibrosis Foundation (CFF) has supported a nationwide care center network and patient registry, which has served as a model for effective multidisciplinary care of chronic disease and the application of quality improvement principles. The Foundation has generously funded clinical and basic research to improve diagnostic testing, define the pathogenesis of cystic fibrosis lung disease, and has spearheaded the search for a cure. It created the Therapeutic Development Network, a multicenter clinical trial network that has brought newer, promising treatments to patients with cystic fibrosis. These advances have provided hope to families that their children will have longer lives and potentially cures will someday be found. But today, cystic fibrosis is a life-shortening disease and more work needs to be done.
The American Thoracic Society and the Cystic Fibrosis Foundation have long advocated for greater federal and local support for research, education, and development of new resources to aid children and their families. More funding is needed. We welcome "Cystic Fibrosis Week at the ATS" and our partnership in this awareness campaign. We look forward to sharing information that will help guide families, advance research, and support clinicians and allied health professionals in their efforts to cure cystic fibrosis.
Thomas Ferkol, MD
Beth Sufian, JD
ATS CF PARtner — Cystic Fibrosis Foundation
When the Cystic Fibrosis Foundation was established in 1955, most children did not live to attend elementary school. Today, the predicted median age of survival is in the mid-30s, thanks — in large part — to the care provided though the national network of CF Foundation-accredited centers. The CF Foundation is a world leader in the search for a cure for cystic fibrosis. It funds more CF research than any other organization, and nearly every CF drug available today was made possible because of the Foundation’s support. The focus of the CF Foundation is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure. The Foundation funds and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease.
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