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Cystic Fibrosis Cases Missed by Newborn Bloodspot Screening-Towards a Consistent Definition and Data Acquisition.
Munck, Anne; Southern, Kevin W; Murphy, Jared; de Winter-de Groot, Karin M; Gartner, Silvia; Karadag, Bülent; Kashirskaya, Nataliya; Linnane, Barry; Proesmans, Marijke; Sands, Dorota; Sommerburg, Olaf; Castellani, Carlo; Barben, Jürg.
Afiliación
  • Munck A; Hospital Necker Enfants-Malades, AP-HP, CF Centre, University Paris Descartes, 75015 Paris, France.
  • Southern KW; Department of Women's and Children's Health, University of Liverpool, Liverpool L69 3BX, UK.
  • Murphy J; Department of Women's and Children's Health, University of Liverpool, Liverpool L69 3BX, UK.
  • de Winter-de Groot KM; Department of Paediatric Pulmonology & Allergology, Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht University, 3508 AB Utrecht, The Netherlands.
  • Gartner S; Pediatric Pulmonology and Cystic Fibrosis Unit, Hospital Universitari Vall d'Hebron, 08035 Barcelona, Spain.
  • Karadag B; Department of Pediatric Pulmonology, Marmara University, 34890 Istanbul, Turkey.
  • Kashirskaya N; Laboratory of Genetic Epidemiology, Research Centre for Medical Genetics, Moscow Regional Research and Clinical Institute, Moscow 115522, Russia.
  • Linnane B; School of Medicine and Centre for Interventions in Infection, Inflammation & Immunity (4i), University of Limerick, V94 T9PX Limerick, Ireland.
  • Proesmans M; Division of Woman and Child, Department of Pediatrics, University Hospitals Leuven, 3000 Leuven, Belgium.
  • Sands D; Cystic Fibrosis Department, Institute of Mother and Child, 01-211 Warsaw, Poland.
  • Sommerburg O; Paediatric Pulmonology, Allergology & CF Centre, Department of Paediatrics III, University Hospital Heidelberg, 69120 Heidelberg, Germany.
  • Castellani C; Translational Lung Research Center, German Lung Research Center, University Hospital Heidelberg, 69120 Heidelberg, Germany.
  • Barben J; Cystic Fibrosis Center, IRCCS Istituto Giannina Gaslini, 16147 Genova, Italy.
Int J Neonatal Screen ; 9(4)2023 Nov 21.
Article en En | MEDLINE | ID: mdl-38132824
ABSTRACT
Repeated European surveys of newborn bloodspot screening (NBS) have shown varied strategies for collecting missed cases, and information on data collection differs among countries/regions, hampering data comparison. The ECFS Neonatal Screening Working Group defined missed cases by NBS as either false negatives, protocol-related, concerning analytical issues, or non-protocol-related, concerning pre- and post-analytical issues. A questionnaire has been designed and sent to all key workers identified in each NBS programme to assess the feasibility of collecting data on missed cases, the stage of the NBS programme when the system failed, and individual patient data on each missed case.
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Texto completo: 1 Banco de datos: MEDLINE Idioma: En Revista: Int J Neonatal Screen Año: 2023 Tipo del documento: Article País de afiliación: Francia
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Banco de datos: MEDLINE Idioma: En Revista: Int J Neonatal Screen Año: 2023 Tipo del documento: Article País de afiliación: Francia