Patient Registry Annual Data Report 2020

Cystic Fibrosis Foundation. Patient Registry Annual Data Report. 2021.

The Annual Data Report is based on data entered in the CF Foundation Patient Registry through our online portal, PortCF©. Data are entered by teams of dedicated health professionals in our nationwide network of more than 120 CF Foundation-accredited Care Centers.

This Annual Data Report contains data from individuals diagnosed with CF who (a) have consented to participate in the Registry, and (b) were seen in a CF Care Center during the 2020 calendar year, including those who were born, diagnosed, or died in the year. Data from individuals who have received a lung transplant were only included in the chapters on Demographics, Diagnosis, CFTR Gene Variants, Transplantation, and Survival.

The included populations represented in the figures vary and are based on the eligibility criteria described in the title and/or footnotes for the figure. Figures titled in gray reflect patient-level data that include individuals who have received a transplant. Figures titled in purple reflect patient-level data that do NOT include individuals who have received a lung transplant. Figures titled in blue present data on center-level variation across the CF Care Network. To reduce outliers, the majority of the center-level variation figures exclude centers with fewer than 10 individuals for that measure. Some center-level variation figures, such as cystic fibrosis-related diabetes (CFRD), infant, and pulmonary exacerbation measures, include centers with five or more eligible individuals for sufficient comparison.

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