The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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The Cystic Fibrosis Foundation today mourns the passing of legendary sports journalist Frank Deford, whose young daughter Alex lost her fight to CF in 1980, and who served as chair of the Cystic Fibrosis Foundation's Board of Trustees from 1982-1999.
The Cystic Fibrosis Lung Transplant Consortium Biorepository and Patient Registry, in collaboration with Cleveland Clinic, will provide critical clinical data and samples to support future research investigating complications of lung transplant.
Today, there are close to 40,000 people in the United States with CF due in large part to more people living longer into adulthood, signaling a shift in what it means to live with CF in the modern era.
A decade of strategic efforts to improve care has played a profound role in improving the quality and length of life for people with cystic fibrosis in the United States, according to a series of reports published in the April issue of BMJ Quality & Safety (formerly the British Medical Journal).
As a mother of three sons with cystic fibrosis, Mary along with her husband, Harry, was determined to do all she could to find a cure.