PATIENT REGISTRY ANNUAL DATA REPORT - Cystic …
6 hours ago · Date: Friday, November 20, 2020. The ECFS Patient Registry Annual Data Report 2018 is available. Each calendar year the ECFS Patient Registry publishes a detailed Annual … >> Go To The Portal
What data does the ECFS patient registry publish?
Each calendar year the ECFS Patient Registry publishes a detailed Annual Report with demographic and clinical data from people with CF throughout Europe and neighbouring countries who agree to participate in the Registry. We also publish At-a-glance Reports with key information from the Annual Data Reports.
Where is the CF Foundation annual data report based?
ABOUT THIS REPORT 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. Inclusion Criteria
What data is included in the CF Foundation patient registry?
The CF Foundation Patient Registry (CFFPR) is composed of data collected via the CF Foundation Care Center Network, including participant demographic characteristics, routine clinical measurements, therapeutic history, hospitalizations, transplant, and vital status.
How are CF data reported to the cffpr?
Data reported to the CFFPR are obtained exclusively through participant contact with the CF Care Center, which is based on an interdisciplinary approach to monitor aspects of CF-related disease.
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