Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference
File(s)
Accepted version
Author(s)
Type
Journal Article
Abstract
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. The aim of this paper is to summarise the
discussions and present consensus recommendations which can be used to support
development of NBS programmes in European countries where they do not yet exist, and to
review existing programmes.
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. The aim of this paper is to summarise the
discussions and present consensus recommendations which can be used to support
development of NBS programmes in European countries where they do not yet exist, and to
review existing programmes.
Date Issued
2018-11
Date Acceptance
2018-07-26
Citation
British Journal of Haematology, 2018, 183 (4), pp.648-660
ISSN
1365-2141
Publisher
Wiley
Start Page
648
End Page
660
Journal / Book Title
British Journal of Haematology
Volume
183
Issue
4
Copyright Statement
© 2018 British Society for Haematology and John Wiley & Sons Ltd. This is the accepted version of the following article: Lobitz, S. , Telfer, P. , Cela, E. , Allaf, B. , Angastiniotis, M. , Backman Johansson, C. , Badens, C. , Bento, C. , Bouva, M. J., Canatan, D. , Charlton, M. , Coppinger, C. , Daniel, Y. , Montalembert, M. , Ducoroy, P. , Dulin, E. , Fingerhut, R. , Frömmel, C. , García‐Morin, M. , Gulbis, B. , Holtkamp, U. , Inusa, B. , James, J. , Kleanthous, M. , Klein, J. , Kunz, J. B., Langabeer, L. , Lapouméroulie, C. , Marcao, A. , Marín Soria, J. L., McMahon, C. , Ohene‐Frempong, K. , Périni, J. , Piel, F. B., Russo, G. , Sainati, L. , Schmugge, M. , Streetly, A. , Tshilolo, L. , Turner, C. , Venturelli, D. , Vilarinho, L. , Yahyaoui, R. , Elion, J. , Colombatti, R. and , (2018), Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference. Br J Haematol, 183: 648-660, which has been published in final form at https://doi.org/10.1111/bjh.15600
Sponsor
Medical Research Council (MRC)
Identifier
https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.15600
Grant Number
MR/L01341X/1
Subjects
haemoglobinopathies
newborn screening
prevention
sickle cell anaemia
sickle cell disease
Anemia, Sickle Cell
Consensus Development Conferences as Topic
Europe
Female
Humans
Infant, Newborn
Male
Neonatal Screening
Practice Guidelines as Topic
with the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases
Humans
Anemia, Sickle Cell
Neonatal Screening
Infant, Newborn
Europe
Female
Male
Consensus Development Conferences as Topic
Practice Guidelines as Topic
Immunology
1102 Cardiorespiratory Medicine and Haematology
Publication Status
Published
Date Publish Online
2018-10-18