Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference
Autor(a) principal: | |
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Data de Publicação: | 2018 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.18/6266 |
Resumo: | 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. |
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Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus ConferenceHaemoglobinopathiesNewborn ScreeningPreventionSickle Cell AnaemiaSickle Cell DiseaseDoenças GenéticasSickle 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.John Wiley and Sons/ British Society for HaematologyRepositório Científico do Instituto Nacional de SaúdeLobitz, StephanTelfer, PaulCela, ElenaAllaf, BichrAngastiniotis, MichaelBackman Johansson, CarolinaBadens, CatherineBento, CelesteBouva, Marelle J.Canatan, DuranCharlton, MatthewCoppinger, CathyDaniel, Yvonnede Montalembert, MarianneDucoroy, PatrickDulin, ElenaFingerhut, RalphFrömmel, ClaudiaGarcía-Morin, MarinaGulbis, BéatriceHoltkamp, UteInusa, BabaJames, JohnKleanthous, MarinaKlein, JeannetteKunz, Joachim B.Langabeer, LisaLapouméroulie, ClaudineMarcao, AnaMarín Soria, José L.McMahon, CorrinaOhene-Frempong, KwakuPérini, Jean-MarcPiel, Frédéric B.Russo, GiovannaSainati, LauraSchmugge, MarkusStreetly, AllisonTshilolo, LeonTurner, CharlesVenturelli, DonatellaVilarinho, LauraYahyaoui, RachelElion, JacquesColombatti, Raffaellawith the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases2019-03-21T14:30:43Z2018-10-182018-10-18T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/6266engBr J Haematol. 2018 Nov;183(4):648-660. doi: 10.1111/bjh.15600. Epub 2018 Oct 180007-104810.1111/bjh.15600info:eu-repo/semantics/embargoedAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:41:19Zoai:repositorio.insa.pt:10400.18/6266Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:40:55.922512Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
title |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
spellingShingle |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference Lobitz, Stephan Haemoglobinopathies Newborn Screening Prevention Sickle Cell Anaemia Sickle Cell Disease Doenças Genéticas |
title_short |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
title_full |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
title_fullStr |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
title_full_unstemmed |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
title_sort |
Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference |
author |
Lobitz, Stephan |
author_facet |
Lobitz, Stephan Telfer, Paul Cela, Elena Allaf, Bichr Angastiniotis, Michael Backman Johansson, Carolina Badens, Catherine Bento, Celeste Bouva, Marelle J. Canatan, Duran Charlton, Matthew Coppinger, Cathy Daniel, Yvonne de Montalembert, Marianne Ducoroy, Patrick Dulin, Elena Fingerhut, Ralph Frömmel, Claudia García-Morin, Marina Gulbis, Béatrice Holtkamp, Ute Inusa, Baba James, John Kleanthous, Marina Klein, Jeannette Kunz, Joachim B. Langabeer, Lisa Lapouméroulie, Claudine Marcao, Ana Marín Soria, José L. McMahon, Corrina Ohene-Frempong, Kwaku Périni, Jean-Marc Piel, Frédéric B. Russo, Giovanna Sainati, Laura Schmugge, Markus Streetly, Allison Tshilolo, Leon Turner, Charles Venturelli, Donatella Vilarinho, Laura Yahyaoui, Rachel Elion, Jacques Colombatti, Raffaella with the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases |
author_role |
author |
author2 |
Telfer, Paul Cela, Elena Allaf, Bichr Angastiniotis, Michael Backman Johansson, Carolina Badens, Catherine Bento, Celeste Bouva, Marelle J. Canatan, Duran Charlton, Matthew Coppinger, Cathy Daniel, Yvonne de Montalembert, Marianne Ducoroy, Patrick Dulin, Elena Fingerhut, Ralph Frömmel, Claudia García-Morin, Marina Gulbis, Béatrice Holtkamp, Ute Inusa, Baba James, John Kleanthous, Marina Klein, Jeannette Kunz, Joachim B. Langabeer, Lisa Lapouméroulie, Claudine Marcao, Ana Marín Soria, José L. McMahon, Corrina Ohene-Frempong, Kwaku Périni, Jean-Marc Piel, Frédéric B. Russo, Giovanna Sainati, Laura Schmugge, Markus Streetly, Allison Tshilolo, Leon Turner, Charles Venturelli, Donatella Vilarinho, Laura Yahyaoui, Rachel Elion, Jacques Colombatti, Raffaella with the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Repositório Científico do Instituto Nacional de Saúde |
dc.contributor.author.fl_str_mv |
Lobitz, Stephan Telfer, Paul Cela, Elena Allaf, Bichr Angastiniotis, Michael Backman Johansson, Carolina Badens, Catherine Bento, Celeste Bouva, Marelle J. Canatan, Duran Charlton, Matthew Coppinger, Cathy Daniel, Yvonne de Montalembert, Marianne Ducoroy, Patrick Dulin, Elena Fingerhut, Ralph Frömmel, Claudia García-Morin, Marina Gulbis, Béatrice Holtkamp, Ute Inusa, Baba James, John Kleanthous, Marina Klein, Jeannette Kunz, Joachim B. Langabeer, Lisa Lapouméroulie, Claudine Marcao, Ana Marín Soria, José L. McMahon, Corrina Ohene-Frempong, Kwaku Périni, Jean-Marc Piel, Frédéric B. Russo, Giovanna Sainati, Laura Schmugge, Markus Streetly, Allison Tshilolo, Leon Turner, Charles Venturelli, Donatella Vilarinho, Laura Yahyaoui, Rachel Elion, Jacques Colombatti, Raffaella with the endorsement of EuroBloodNet, the European Reference Network in Rare Haematological Diseases |
dc.subject.por.fl_str_mv |
Haemoglobinopathies Newborn Screening Prevention Sickle Cell Anaemia Sickle Cell Disease Doenças Genéticas |
topic |
Haemoglobinopathies Newborn Screening Prevention Sickle Cell Anaemia Sickle Cell Disease Doenças Genéticas |
description |
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. |
publishDate |
2018 |
dc.date.none.fl_str_mv |
2018-10-18 2018-10-18T00:00:00Z 2019-03-21T14:30:43Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10400.18/6266 |
url |
http://hdl.handle.net/10400.18/6266 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Br J Haematol. 2018 Nov;183(4):648-660. doi: 10.1111/bjh.15600. Epub 2018 Oct 18 0007-1048 10.1111/bjh.15600 |
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info:eu-repo/semantics/embargoedAccess |
eu_rights_str_mv |
embargoedAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
John Wiley and Sons/ British Society for Haematology |
publisher.none.fl_str_mv |
John Wiley and Sons/ British Society for Haematology |
dc.source.none.fl_str_mv |
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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1799132151960043520 |