source: British journal of haematology

year: 2018

authors: Lobitz S, Telfer P, Cela E, Allaf B, Angastiniotis M, Backman Johansson C, Badens C, Bento C, Bouva MJ, Canatan D, Charlton M, Coppinger C, Daniel Y, de 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 JB, Langabeer L, Lapouméroulie C, Marcao A, Marín Soria JL, McMahon C, Ohene-Frempong K, Périni JM, Piel FB, Russo G, Sainati L, Schmugge M, Streetly A, Tshilolo L, Turner C, Venturelli D, Vilarinho L, Yahyaoui R, Elion J, Colombatti R

summary/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. 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.

organization: Kinderkrankenhaus Amsterdamer Straße, Germany; Charité - Universitätsmedizin Berlin, Germany; Royal London Hospital, United Kingdom; Universidad Complutense Madrid, Spain; Hôpital universitaire Robert-Debré, France; Thalassaemia International Federation, Cyprus; Karolinska University Hospital, Sweden; Hôpital de la Timone, France; Centro Hospitalar e Universitário de Coimbra, Portugal; National Institute for Public Health and the Environment, The Netherlands; Mediterranean Blood Diseases Foundation, Turkey; NHS Sickle Cell and Thalassaemia Screening Programme, United Kingdom; AP-HP Hôpital Universitaire Necker-Enfants Malades, France; BIOMANEO, France; Universitätskinderspital Zürich- Eleonorenstiftung, Switzerland; Labor Berlin - Charité Vivantes GmbH, Germany; Hôpital Erasme - ULB, Belgium; Screening-Labor Hannover, Germany; Guy's and St Thomas' NHS Trust, United Kingdom; Sickle Cell Society UK, United Kingdom; The Cyprus Institute of Neurology and Genetics, Cyprus; University of Heidelberg, Germany; Our Lady's Children's Hospital, Ireland; Institut National de la Transfusion Sanguine, France; Instituto Nacional de Saúde Dr. Ricardo Jorge, Portugal; Hospital Clínic, Spain; Sickle Cell Foundation of Ghana, Ghana; University Hospital of Lille, France; Imperial College London, United Kingdom; University of Catania, Italy; Azienda Ospedaliera-Università di Padova, Italy; King's College London, United Kingdom; Public Health England, United Kingdom; Centre Hospitalier Monkole, Democratic Republic of Congo; Evelina London Children's Hospital, United Kingdom; University Hospital of Modena, Italy; Málaga Regional University Hospital, Spain

DOI: 10.1111/bjh.15600

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