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 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.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
Daily CF treatments take time, patience and persistence. But the benefits of managing your treatment plan outweigh the drawbacks so that you can achieve more of your personal goals.
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).