The Genetic Epidemiology Laboratory researchers published a joint study to evaluate the effectiveness of newborn screening programs for cystic fibrosis
Journal of Cystic Fibrosis (Impact Factor 5.482) published the paper written jointly with N.Y. Kashirskaya, chief researcher of the FSBI RCMG Genetic Epidemiology Laboratory (headed by Professor R.A. Zinchenko, Doctor of med. sci.). The research was carried out in collaboration with members of the Neonatal CF Screening Working Group of the European Cystic Fibrosis Society (Munck A, Southern KW, Castellani C, de Winter-de Groot KM, Gartner S, Kashirskaya N, Linnane B, Mayell SJ, Proesmans M, Sands D, Sommerburg O, Barben J) (ECFS NSWG).
The aim of the Neonatal Cystic Fibrosis Screening (CF) Working Group of the European Cystic Fibrosis Society (ECFS) is to monitor the effectiveness of neonatal CF screening programs in Europe, to optimize the effectiveness and reduce the negative impact of screening in accordance with published international recommendations. To improve data collection and compare the effectiveness of different programs, the authors, in their brief communication, first proposed 8 key outcomes from the neonatal screening program coverage to the age determination of infants at the initial CF center visit, and 20 indicators needed to calculate these outcomes. Due to compiling a list of indicators with clear definitions, the data collection in European countries and regions with neonatal screening for cystic fibrosis will be more efficient.
Munck A, Southern KW, Castellani C, de Winter-de Groot KM, Gartner S, Kashirskaya N, Linnane B, Mayell SJ, Proesmans M, Sands D, Sommerburg O, Barben J; European CF Society Neonatal Screening Working Group (ECFS NSWG). Defining key outcomes to evaluate performance of newborn screening programmes for cystic fibrosis. J Cyst Fibros. 2021 Sep;20(5):820-823. doi: 10.1016/j.jcf.2021.02.006