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

Author:

Lobitz Stephan12ORCID,Telfer Paul3,Cela Elena4ORCID,Allaf Bichr5,Angastiniotis Michael6,Backman Johansson Carolina7,Badens Catherine8,Bento Celeste9,Bouva Marelle J.10,Canatan Duran11,Charlton Matthew12,Coppinger Cathy12,Daniel Yvonne12,de Montalembert Marianne13,Ducoroy Patrick14,Dulin Elena4,Fingerhut Ralph15,Frömmel Claudia16,García-Morin Marina4,Gulbis Béatrice17,Holtkamp Ute18,Inusa Baba19,James John20,Kleanthous Marina21,Klein Jeannette22,Kunz Joachim B.23,Langabeer Lisa24,Lapouméroulie Claudine25,Marcao Ana26,Marín Soria José L.27,McMahon Corrina24,Ohene-Frempong Kwaku28,Périni Jean-Marc29,Piel Frédéric B.30ORCID,Russo Giovanna31,Sainati Laura32,Schmugge Markus33,Streetly Allison3435,Tshilolo Leon36,Turner Charles37,Venturelli Donatella38,Vilarinho Laura26,Yahyaoui Rachel39,Elion Jacques25,Colombatti Raffaella32,

Affiliation:

1. Department of Paediatric Oncology/Haematology; Kinderkrankenhaus Amsterdamer Straße; Cologne Germany

2. Department of Paediatric Oncology/Haematology/BMT; Charité - Universitätsmedizin Berlin; Berlin Germany

3. Department of Haematology; Bart's Health National Health Service Trust; Royal London Hospital; London United Kingdom

4. Department of Paediatric Oncology/Haematology; Hospital Universitario General Gregorio Marañón; Facultad de Medicina; Universidad Complutense Madrid; Madrid Spain

5. NBS Laboratory for haemoglobinopathies; Hôpital universitaire Robert-Debré; Paris France

6. Thalassaemia International Federation; Nicosia Cyprus

7. Centre for Inherited Metabolic Diseases - PKU Laboratory; Karolinska University Hospital; Stockholm Sweden

8. Département de génétique médicale; Aix-Marseille Université, Hôpital de la Timone; Marseille France

9. Department of Haematology; Centro Hospitalar e Universitário de Coimbra; Coimbra Portugal

10. Centre for Infectious Disease Research; Diagnostics and Screening; National Institute for Public Health and the Environment; Bilthoven The Netherlands

11. Haemoglobinopathy Diagnosis Centre; Mediterranean Blood Diseases Foundation; Antalya Turkey

12. Public Health England; NHS Sickle Cell and Thalassaemia Screening Programme; London United Kingdom

13. Department of Paediatrics; Reference Centre for Sickle Cell Disease; AP-HP Hôpital Universitaire Necker-Enfants Malades; Paris France

14. BIOMANEO; Dijon France

15. NBS Laboratory; Universitätskinderspital Zürich- Eleonorenstiftung; Zurich Switzerland

16. Labor Berlin - Charité Vivantes GmbH; Berlin Germany

17. Department of Clinical Chemistry; Cliniques universitaires de Bruxelles; Hôpital Erasme - ULB; Bruxelles Belgium

18. Screening-Labor Hannover; Ronnenberg Germany

19. Evelina London Children's Hospital; Guy's and St Thomas’ NHS Trust; London United Kingdom

20. Sickle Cell Society UK; London United Kingdom

21. Molecular Genetics Thalassaemia Department; The Cyprus School of Molecular Medicine; The Cyprus Institute of Neurology and Genetics; Nicosia Cyprus

22. NBS Laboratory; Charité - Universitätsmedizin Berlin; Berlin Germany

23. Department of Paediatric Oncology, Haematology and Immunology; University of Heidelberg; Heidelberg Germany

24. Our Lady's Children's Hospital; Crumlin, Dublin Ireland

25. Laboratoire d'Excellence GR-Ex; UMR_S1134; Inserm; Université Paris Diderot; Sorbonne Paris Cité; Institut National de la Transfusion Sanguine; Paris France

26. Department of Human Genetics - Newborn Screening, Metabolism and Genetics Unit; Instituto Nacional de Saúde Dr. Ricardo Jorge; Porto Portugal

27. Programa de Cribado Neonatal; Sección Errores Congénitos del Metabolismo; Servicio de Bioquímica y Genética Molecular; Hospital Clínic; Barcelona Spain

28. Sickle Cell Foundation of Ghana; Kumasi Ghana

29. NBS Laboratory; University Hospital of Lille; Lille France

30. Department of Epidemiology & Biostatistics; School of Public Health; Imperial College London; London United Kingdom

31. Department of Clinical and Experimental Medicine; Paediatric Haemato-Oncology Unit; University of Catania; Catania Italy

32. Department of Child and Maternal Health; Clinic of Paediatric Haematology/Oncology; Azienda Ospedaliera-Università di Padova; Padova Italy

33. Department of Paediatric Haematology; Universitätskinderspital Zürich - Eleonorenstiftung; Zurich Switzerland

34. School of Population Health and Environmental Sciences; Faculty of Life Sciences & Medicine, King's College London; London United Kingdom

35. Division of Healthcare Public Health, Health Protection and Medical Directorate; Public Health England; London United Kingdom

36. Centre Hospitalier Monkole; Kinshasa Democratic Republic of Congo

37. WellChild Laboratory; Evelina London Children's Hospital; London United Kingdom

38. Department of Transfusion Medicine; University Hospital of Modena; Modena Italy

39. Instituto de Investigación Biomédica de Málaga; Málaga Regional University Hospital; Málaga Spain

Publisher

Wiley

Subject

Hematology

Reference99 articles.

1. Discontinuing prophylactic transfusions used to prevent stroke in sickle cell disease;Adams;New England Journal of Medicine,2005

2. Transcranial Doppler correlation with cerebral angiography in sickle cell disease;Adams;Stroke,1992

3. Prevention of a first stroke by transfusions in children with sickle cell anemia and abnormal results on transcranial Doppler ultrasonography;Adams;New England Journal of Medicine,1998

4. Prevention of thalassaemia in Cyprus;Angastiniotis;Lancet,1981

5. Universal neonatal screening for sickle cell disease and other haemoglobinopathies in Ferrara, Italy;Ballardini;Blood Transfusion,2013

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