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Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference

Sickle Cell Disease (SCD) is an increasing global health problem and presents significant challenges to European health care systems. Newborn screening (NBS) for SCD enables early initiation of preventive measures and has contributed to a reduction in childhood mortality from SCD. Policies and metho...

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Main Authors: Lobitz, Stephan (Author) , Telfer, Paul (Author) , Cela, Elena (Author) , Allaf, Bichr (Author) , Angastiniotis, Michael (Author) , Johansson, Carolina Backman (Author) , Badens, Catherine (Author) , Bento, Celeste (Author) , Bouva, Marelle J. (Author) , Canatan, Duran (Author) , Charlton, Matthew (Author) , Coppinger, Cathy (Author) , Daniel, Yvonne (Author) , Montalembert, Marianne de (Author) , Ducoroy, Patrick (Author) , Dulin, Elena (Author) , Fingerhut, Ralph (Author) , Frömmel, Claudia (Author) , García‐Morin, Marina (Author) , Gulbis, Béatrice (Author) , Holtkamp, Ute (Author) , Inusa, Baba (Author) , James, John (Author) , Kleanthous, Marina (Author) , Klein, Jeannette (Author) , Kunz, Joachim (Author) , Langabeer, Lisa (Author) , Lapouméroulie, Claudine (Author) , Marcao, Ana (Author) , Soria, José L. Marín (Author) , McMahon, Corrina (Author) , Ohene‐Frempong, Kwaku (Author) , Périni, Jean-Marc (Author) , Piel, Frédéric B. (Author) , Russo, Giovanna (Author) , Sainati, Laura (Author) , Schmugge, Markus (Author) , Streetly, Allison (Author) , Tshilolo, Leon (Author) , Turner, Charles (Author) , Venturelli, Donatella (Author) , Vilarinho, Laura (Author) , Yahyaoui, Rachel (Author) , Elion, Jacques (Author) , Colombatti, Raffaella (Author)
Format: Article (Journal)
Language:English
Published: 18 October 2018
In: British journal of haematology
Year: 2018, Volume: 183, Issue: 4, Pages: 648-660
ISSN:1365-2141
DOI:10.1111/bjh.15600
Online Access:Verlag, Volltext: https://doi.org/10.1111/bjh.15600
Verlag: https://onlinelibrary.wiley.com/doi/abs/10.1111/bjh.15600
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Author Notes:Stephan Lobitz, Paul Telfer, Elena Cela, Bichr Allaf, Michael Angastiniotis, Carolina Backman Johansson, Catherine Badens, Celeste Bento, Marelle J. Bouva, Duran Canatan, Matthew Charlton, Cathy Coppinger, Yvonne Daniel, Marianne de Montalembert, Patrick Ducoroy, Elena Dulin, Ralph Fingerhut, Claudia Frömmel, Marina García‐Morin, Béatrice Gulbis, Ute Holtkamp, Baba Inusa, John James, Marina Kleanthous, Jeannette Klein, Joachim B. Kunz, Lisa Langabeer, Claudine Lapouméroulie, Ana Marcao, José L. Marín Soria, Corrina McMahon, Kwaku Ohene‐Frempong, Jean-Marc Périni, Frédéric B. Piel, Giovanna Russo, Laura Sainati, Markus Schmugge, Allison Streetly, Leon Tshilolo, Charles Turner, Donatella Venturelli, Laura Vilarinho, Rachel Yahyaoui, Jacques Elion, Raffaella Colombatti
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Summary:Sickle Cell Disease (SCD) is an increasing global health problem and presents significant challenges to European health care systems. Newborn screening (NBS) for SCD enables early initiation of preventive measures and has contributed to a reduction in childhood mortality from SCD. Policies and methodologies for NBS vary in different countries, and this might have consequences for the quality of care and clinical outcomes for SCD across Europe. A two-day Pan-European consensus conference was held in Berlin in April 2017 in order to appraise the current status of NBS for SCD and to develop consensus-based statements on indications and methodology for NBS for SCD in Europe. More than 50 SCD experts from 13 European countries participated in the conference. This paper aims to summarise the discussions and present consensus recommendations which can be used to support the development of NBS programmes in European countries where they do not yet exist, and to review existing programmes.
Item Description:Gesehen am 26.02.2020
Physical Description:Online Resource
ISSN:1365-2141
DOI:10.1111/bjh.15600

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