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.
Regular CF care center visits are important to maintain your health. The following tips are intended to help you make informed decisions to protect yourself and others from catching and spreading germs while at a care center visit, in the hospital or in any other health care setting.
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.
The Burkholderia cepacia complex (B. cepacia) consists of different species of bacteria that are found in the natural environment. Some of these species pose serious risks to the health of a person with cystic fibrosis.