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- W4380086041 abstract "The European guidelines recommend newborn screening and access to specialist care from early in life in cystic fibrosis (CF). Most European countries have newborn screening and access to the new modulator treatment. We compare 2 CF centres located in Ukraine and Sweden. Data from the European CF registry -report 2020 for Sweden and Ukraine was used for discussing CF care in the two countries and two paediatric CF centres in Lviv (Ukraine) and Lund (Sweden). In Ukraine, newborn screening was implemented in 2013, leading to early diagnosis in CF. Modulator treatment is not available. The CF centre in Lviv follows Ukrainian CF individuals from Lviv and nearby regions, although some may have local follow-up. There is no national CF registry. In Sweden, newborn screening is not available, leading to later diagnosis, and only ivacaftor/lumacaftor was available prior December 2022. All CF individuals are followed at CF centres with a minimum of 4 annual microbiological collections. All patients are included in the national registry. Both Lviv and Lund follow about 65 children with CF, and according to the Registry report, lung function in the 6–17 years olds is equal with FEV1 of 90.7% of predicted in Ukraine, 91.9% of predicted in Sweden. Even in the adult population, there is no difference in FEV1 between the two countries (73.5 and 73.1, respectively); but the number of adult patients in the registry was 26 in Ukraine, 327 in all of Sweden. CF care depends on many factors: Access to a CF centre, use of microbiological testing, access to free medications and the possibility of at home treatments to avoid the risk of cross infection in the hospital. We found that although CF treatment guidelines were known and used in both countries, there were huge differences in the CF care. We also found that equal lung function in two countries may not reveal the whole truth. Even within Europe, there are large differences in CF care." @default.
- W4380086041 created "2023-06-10" @default.
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- W4380086041 date "2023-06-01" @default.
- W4380086041 modified "2023-09-27" @default.
- W4380086041 title "P133 Cystic fibrosis in two countries located in Northern and Eastern Europe: problems and perspectives" @default.
- W4380086041 doi "https://doi.org/10.1016/s1569-1993(23)00508-8" @default.
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