Senate Caucus will work with House Caucus to raise awareness, advance policies and support research
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Bill Would Remove Barrier to Clinical Research for Rare Diseases by Ensuring that Clinical Trial Participants Don't Lose Critical Health Benefits
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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.
To ensure that people with CF continue to experience steady gains in length and quality of life, the Foundation helps its accredited care centers provide a standard of CF care with guidelines. We base guidelines on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you're critical in helping people with CF maintain their quality of life. We're committed to helping you partner with your patients and their families by providing resources you can use to improve and continue to provide high-quality care.
Legislation Would Remove Financial Penalties for Participating in Research Studies
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