TY - JOUR
T1 - Newborn screening for sickle cell disease in Europe
T2 - recommendations from a Pan-European Consensus Conference
AU - with the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases
AU - Lobitz, Stephan
AU - Telfer, Paul
AU - Cela, Elena
AU - Allaf, Bichr
AU - Angastiniotis, Michael
AU - Backman Johansson, Carolina
AU - Badens, Catherine
AU - Bento, Celeste
AU - Bouva, Marelle J.
AU - Canatan, Duran
AU - Charlton, Matthew
AU - Coppinger, Cathy
AU - Daniel, Yvonne
AU - de Montalembert, Marianne
AU - Ducoroy, Patrick
AU - Dulin, Elena
AU - Fingerhut, Ralph
AU - Frömmel, Claudia
AU - García-Morin, Marina
AU - Gulbis, Béatrice
AU - Holtkamp, Ute
AU - Inusa, Baba
AU - James, John
AU - Kleanthous, Marina
AU - Klein, Jeannette
AU - Kunz, Joachim B.
AU - Langabeer, Lisa
AU - Lapouméroulie, Claudine
AU - Marcao, Ana
AU - Marín Soria, José L.
AU - McMahon, Corrina
AU - Ohene-Frempong, Kwaku
AU - Périni, Jean Marc
AU - Piel, Frédéric B.
AU - Russo, Giovanna
AU - Sainati, Laura
AU - Schmugge, Markus
AU - Streetly, Allison
AU - Tshilolo, Leon
AU - Turner, Charles
AU - Venturelli, Donatella
AU - Vilarinho, Laura
AU - Yahyaoui, Rachel
AU - Elion, Jacques
AU - Colombatti, Raffaella
PY - 2018/10/18
Y1 - 2018/10/18
N2 - 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.
AB - 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.
KW - haemoglobinopathies
KW - newborn screening
KW - prevention
KW - sickle cell anaemia
KW - sickle cell disease
UR - http://www.scopus.com/inward/record.url?scp=85055279822&partnerID=8YFLogxK
U2 - 10.1111/bjh.15600
DO - 10.1111/bjh.15600
M3 - Article
AN - SCOPUS:85055279822
SN - 0007-1048
JO - British Journal of Haematology
JF - British Journal of Haematology
ER -