Publications by the ECFS NSWG:

Members of the working group have written a series of articles on newborn screening for CF which have been published as a book in September 2020:
Newborn Screening for Cystic Fibrosis

Table of Content:

  • Jürg Barben and Kevin W. Southern, Why Do We Screen Newborn Infants for Cystic Fibrosis?
    Int. J. Neonatal Screen. 2020, 6, 56, doi:10.3390/ijns6030056
  • Carlo Castellani, Newborn Screening for Cystic Fibrosis: Over the Hump, Still Need to Fine-Tune It
    Int. J. Neonatal Screen. 2020, 6, 57, doi:10.3390/ijns6030057 
  • Georges Travert, Mary Heeley and Anthony Heeley, History of Newborn Screening for Cystic Fibrosis—The Early Years
    Int. J. Neonatal Screen. 2020, 6, 8, doi:10.3390/ijns6010008
  • Lutz Naehrlich, The Changing Face of Cystic Fibrosis and Its Implications for Screening
    Int. J. Neonatal Screen. 2020, 6, 54, doi:10.3390/ijns6030054
  • Natasha Heather and Dianne Webster, It All Depends What You Count—The Importance of Definitions in Evaluation of CF Screening Performance
    Int. J. Neonatal Screen. 2020, 6, 47, doi:10.3390/ijns6020047
  • Virginie Scotet, Hector Gutierrez and Philip M. Farrell, Newborn Screening for CF across the Globe—Where Is It Worthwhile?
    Int. J. Neonatal Screen. 2020, 6, 18, doi:10.3390/ijns6010018 
  • Rachael E. Armstrong, Lucy Frith, Fiona M. Ulph and KevinW. Southern, Constructing a Bioethical Framework to Evaluate and Optimise Newborn Bloodspot Screening for Cystic Fibrosis
    Int. J. Neonatal Screen. 2020, 6, 40, doi:10.3390/ijns6020040
  • Olaf Sommerburg and Jutta Hammermann, Pancreatitis-Associated Protein in Neonatal Screening for Cystic Fibrosis: Strengths and Weaknesses
    Int. J. Neonatal Screen. 2020, 6, 28, doi:10.3390/ijns6020028 
  • Anne Bergougnoux, Maureen Lopez and Emmanuelle Girodon, The Role of Extended CFTR Gene Sequencing in Newborn Screening for Cystic Fibrosis
    Int. J. Neonatal Screen. 2020, 6, 23, doi:10.3390/ijns6010023
  • Anne Munck, Inconclusive Diagnosis after Newborn Screening for Cystic Fibrosis
    Int. J. Neonatal Screen. 2020, 6, 19, doi:10.3390/ijns6010019 
  • Jürg Barben and Jane Chudleigh, Processing Newborn Bloodspot Screening Results for CF
    J. Neonatal Screen. 2020, 6, 25, doi:10.3390/ijns6020025
  • Jane Chudleigh and Holly Chinnery, Psychological Impact of NBS for CF
    Int. J. Neonatal Screen. 2020, 6, 27, doi:10.3390/ijns6020027

All articles listed in the table of content above can be downloaded here 


Since 2004, the Working Group has published the following articles in the Journal of Cystic Fibrosis.

  • A survey of NBS for CF in Europe
    Journal of Cystic Fibrosis Volume 6 (2007) 57-65
  • A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for cystic fibrosis
    Journal of Cystic Fibrosis Volume 8 (2009) 71-78 Article
  • European best practice guidelines for cystic fibrosis neonatal screening 
    Journal of Cystic Fibrosis Volume 8 (2009) 153-173 Article
  • Guidelines on the early management of Infants diagnosed with CF following NBS
    Journal of Cystic Fibrosis Volume 10 (2010) 323-329
  • Cystic Fibrosis Screen Positive, Inconclusive Diagnosis (CFSPID): A new designation and management recommendations for infants with an inconclusive diagnosis following newborn screening.
    Journal of Cystic Fibrosis Volume 14 (2015) 706-713 Article 
  • The expansion and performance of national newborn screening programmes for cystic fibrosis in Europe. 
    Journal of Cystic Fibrosis Volume 16 (2017) 207-213 Article
  • Inconclusive diagnosis after a positive newborn bloodspot screening result for cystic fibrosis; clarification of the harmonised international definition» 
    Journal of Cystic Fibrosis Volume 18 (2019) 778–780 Article