36 hours ago 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 … >> Go To The Portal
The ECFS Patient Registry (ECFSPR) is a common platform for data collection on CF patients in Europe with the following purposes: a. to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease.
Annual Data Report 2020 Cystic Fibrosis Foundation Patient Registry 13 In 2020, the median age of people with CF in the Registry was 20.3 years. The range is from birth to 89.7 years.
Age (Years) 62Cystic Fibrosis Foundation Patient RegistryAnnual Data Report 2020 Complications of CF, 2020 Age < 18 (%) Age ≥ 18 (%) All (%) Number of Individuals (n) 13,425 16,251 29,676
a. to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease. b. to provide data for epidemiological research. c. to identify special patient groups suitable for multi-centre trials. How can the data be sent to the registry?
Of the people with cystic fibrosis who died in 2013, in Europe half were aged 27 or younger, in the UK half were 29 or younger. Cystic fibrosis healthcare teams strive for a high median age of death, with fewer people dying very young from the disease.
Cystic Fibrosis Trust 2016. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.
An older population suggests that people with cystic fibrosis are living longer. As people with cystic fibrosis live longer, you would expect to see more complications like lower lung function (FEV1) and CF-related diabetes.