BACKGROUND: Successful implementation of newborn screening (NBS) for cystic fibrosis (CF) depends on robust protocols, good communication and appropriate management of recognised infants. In response to current varied practice, the ECFS Neonatal Screening Working Group developed a consensus on the early management of these infants using the Delphi methodology. METHODS: Following detailed literature review, statements were generated by a core group of experts and then assessed by a larger group using modified Delphi methodology. RESULTS: Forty-one statements were written by the core group. Eighty-six CF specialists contributed to the modified Delphi process. During three rounds, extra statements were added and consensus achieved on 44 (one statement did not achieve consensus). CONCLUSIONS: These statements will provide a framework for the management of screened infants in the first year of life. This process highlights the paucity of evidence on which to base management of these infants. To improve this situation, it is important that each infant with CF identified through NBS has opportunity to be included in a randomised controlled trial. Crown
BACKGROUND: Successful implementation of newborn screening (NBS) for cystic fibrosis (CF) depends on robust protocols, good communication and appropriate management of recognised infants. In response to current varied practice, the ECFS Neonatal Screening Working Group developed a consensus on the early management of these infants using the Delphi methodology. METHODS: Following detailed literature review, statements were generated by a core group of experts and then assessed by a larger group using modified Delphi methodology. RESULTS: Forty-one statements were written by the core group. Eighty-six CF specialists contributed to the modified Delphi process. During three rounds, extra statements were added and consensus achieved on 44 (one statement did not achieve consensus). CONCLUSIONS: These statements will provide a framework for the management of screened infants in the first year of life. This process highlights the paucity of evidence on which to base management of these infants. To improve this situation, it is important that each infant with CF identified through NBS has opportunity to be included in a randomised controlled trial. Crown
Authors: Lisa Prach; Ruth Koepke; Martin Kharrazi; Steven Keiles; Danieli B Salinas; Maria Carmen Reyes; Mark Pian; Harry Opsimos; Kimberly N Otsuka; Karen Ann Hardy; Carlos E Milla; Jacquelyn M Zirbes; Bradley Chipps; Susan O'Bra; Muhammad M Saeed; Reddivalam Sudhakar; Susan Lehto; Dennis Nielson; Gregory F Shay; Mary Seastrand; Sanjay Jhawar; Bruce Nickerson; Christopher Landon; Ann Thompson; Eliezer Nussbaum; Terry Chin; Henry Wojtczak Journal: J Mol Diagn Date: 2013-06-28 Impact factor: 5.568
Authors: Anna Zolin; Anna Bossi; Natalia Cirilli; Nataliya Kashirskaya; Rita Padoan Journal: Int J Environ Res Public Health Date: 2018-09-15 Impact factor: 3.390
Authors: Maria F Servidoni; Marisa Sousa; Adriana M Vinagre; Silvia R Cardoso; Maria A Ribeiro; Luciana R Meirelles; Rita B de Carvalho; Karl Kunzelmann; Antônio F Ribeiro; José D Ribeiro; Margarida D Amaral Journal: BMC Gastroenterol Date: 2013-05-20 Impact factor: 3.067