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).
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According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.
Paydon Miller
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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.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
Rich DeNagel