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.
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In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
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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.
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.
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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The latest trends in the health of people with cystic fibrosis who participate in the Patient Registry have been published in the 2017 Patient Registry Highlights Report.
