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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.

Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.

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.

I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.

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).