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54,000 people
- The Registry’s database includes data from more than 54,000 people with CF, from 40 participating countries, and longitudinal data from 2008 to 2021.
www.ecfs.eu › ecfspr
Annual Data Report 2022 Cystic Fibrosis Foundation Patient Registry 5 Trends for In-Person Clinic and Telehealth/Other Encounters The chart below shows the monthly total number of in-person clinic and telehealth or other
- 2021 Annual Data Report
Annual Data Report 2021 Cystic Fibrosis Foundation Patient...
- Patient Registry
The Patient Registry is an invaluable tool for researchers...
- 2021 Annual Data Report
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Annual Data Report 2021 Cystic Fibrosis Foundation Patient Registry 5 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
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The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
Mar 29, 2023 · A Cystic Fibrosis Foundation study estimated that 38,804 people with CF lived in the US in 2020, with 77% participation in the CF registry.
- Science Writer
Oct 28, 2022 · The Cystic Fibrosis Foundation Patient Registry (CFFPR) collects data on individuals with cystic fibrosis (CF) in the United States (US). In 2012, the US CF population was estimated at 33,292 to 34,327 individuals, with 81-84% CFFPR participation.
Jul 15, 2022 · A recent review suggested that there were at least 100,000 pwCF worldwide. 9 In comparison, the 2012 USCFFPR report estimated the total worldwide CF population at 70,000 pwCF. 10 Because the incidence of CF, which lies between 1:2,500 and 1:6,000 in European countries, 11 has not increased over the past decades, the increase in prevalence is att...
Sep 12, 2023 · To date, the available studies from the US utilized data from the Cystic Fibrosis Foundation Patient Registry (CFFPR), composed of patients cared for at specialized CF centers. The US CFFPR is a comprehensive registry that records 81–84% of CF patients with a 90% retention rate, capturing close to 72–75% of CF patients for clinical research ...
