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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Learning that your baby has cystic fibrosis may come as a shock, especially if you do not have a family history of the disease, but you are not alone.
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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.
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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.
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The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.
Starting solid foods is very important for the development and health of babies with cystic fibrosis.
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