Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines
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/10400.17/3331 |
Resumo: | Antiphospholipid syndrome (APS) is a rare disease characterised by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies. This review aims to identify existing clinical practice guidelines (CPG) as part of the ERN ReCONNET project, aimed at evaluating existing CPGs or recommendations in rare and complex diseases. Seventeen papers providing important data were identified; however, the literature search highlighted the scarceness of reliable clinical data to develop CPGs. With no formal clinical guidelines in place, diagnosis and treatment of APS is largely based on consensus and expert opinion. Patients' unmet need refers to the understanding of the disease and its clinical picture and implications, the need of education for patients, family members and healthcare providers, as well as to the development of monitoring pathways involving multiple healthcare providers. |
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Antiphospholipid Syndrome: State of the Art on Clinical Practice GuidelinesHCC MEDERN ReCONNETEuropean Reference NetworksAntiphospholipid SyndromeClinical Practice GuidelinesUnmet NeedsAntiphospholipid syndrome (APS) is a rare disease characterised by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies. This review aims to identify existing clinical practice guidelines (CPG) as part of the ERN ReCONNET project, aimed at evaluating existing CPGs or recommendations in rare and complex diseases. Seventeen papers providing important data were identified; however, the literature search highlighted the scarceness of reliable clinical data to develop CPGs. With no formal clinical guidelines in place, diagnosis and treatment of APS is largely based on consensus and expert opinion. Patients' unmet need refers to the understanding of the disease and its clinical picture and implications, the need of education for patients, family members and healthcare providers, as well as to the development of monitoring pathways involving multiple healthcare providers.BMJ Publishing GroupRepositório do Centro Hospitalar Universitário de Lisboa Central, EPELimper, MScirè, CATalarico, RAmoura, ZAvcin, TBasile, MBurmester, GCarli, LCervera, RCostedoat-Chalumeau, NDoria, ADörner, TEurico Fonseca, JGaletti, IHachulla, ELaunay, DLourenco, FMacieira, CMeroni, PMontecucco, CMMoraes-Fontes, MFMouthon, LNalli, CRamoni, VTektonidou, Mvan Laar, JMBombardieri, SSchneider, MSmith, VVieira, ACutolo, MMosca, MTincani, A2019-10-11T15:38:13Z20182018-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.17/3331engRMD Open. 2018 Oct 18;4(Suppl 1):e000785.10.1136/rmdopen-2018-000785info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-03-10T09:42:26Zoai:repositorio.chlc.min-saude.pt:10400.17/3331Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T17:20:38.794889Repositório 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 |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
title |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
spellingShingle |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines Limper, M HCC MED ERN ReCONNET European Reference Networks Antiphospholipid Syndrome Clinical Practice Guidelines Unmet Needs |
title_short |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
title_full |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
title_fullStr |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
title_full_unstemmed |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
title_sort |
Antiphospholipid Syndrome: State of the Art on Clinical Practice Guidelines |
author |
Limper, M |
author_facet |
Limper, M Scirè, CA Talarico, R Amoura, Z Avcin, T Basile, M Burmester, G Carli, L Cervera, R Costedoat-Chalumeau, N Doria, A Dörner, T Eurico Fonseca, J Galetti, I Hachulla, E Launay, D Lourenco, F Macieira, C Meroni, P Montecucco, CM Moraes-Fontes, MF Mouthon, L Nalli, C Ramoni, V Tektonidou, M van Laar, JM Bombardieri, S Schneider, M Smith, V Vieira, A Cutolo, M Mosca, M Tincani, A |
author_role |
author |
author2 |
Scirè, CA Talarico, R Amoura, Z Avcin, T Basile, M Burmester, G Carli, L Cervera, R Costedoat-Chalumeau, N Doria, A Dörner, T Eurico Fonseca, J Galetti, I Hachulla, E Launay, D Lourenco, F Macieira, C Meroni, P Montecucco, CM Moraes-Fontes, MF Mouthon, L Nalli, C Ramoni, V Tektonidou, M van Laar, JM Bombardieri, S Schneider, M Smith, V Vieira, A Cutolo, M Mosca, M Tincani, A |
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 |
dc.contributor.none.fl_str_mv |
Repositório do Centro Hospitalar Universitário de Lisboa Central, EPE |
dc.contributor.author.fl_str_mv |
Limper, M Scirè, CA Talarico, R Amoura, Z Avcin, T Basile, M Burmester, G Carli, L Cervera, R Costedoat-Chalumeau, N Doria, A Dörner, T Eurico Fonseca, J Galetti, I Hachulla, E Launay, D Lourenco, F Macieira, C Meroni, P Montecucco, CM Moraes-Fontes, MF Mouthon, L Nalli, C Ramoni, V Tektonidou, M van Laar, JM Bombardieri, S Schneider, M Smith, V Vieira, A Cutolo, M Mosca, M Tincani, A |
dc.subject.por.fl_str_mv |
HCC MED ERN ReCONNET European Reference Networks Antiphospholipid Syndrome Clinical Practice Guidelines Unmet Needs |
topic |
HCC MED ERN ReCONNET European Reference Networks Antiphospholipid Syndrome Clinical Practice Guidelines Unmet Needs |
description |
Antiphospholipid syndrome (APS) is a rare disease characterised by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies. This review aims to identify existing clinical practice guidelines (CPG) as part of the ERN ReCONNET project, aimed at evaluating existing CPGs or recommendations in rare and complex diseases. Seventeen papers providing important data were identified; however, the literature search highlighted the scarceness of reliable clinical data to develop CPGs. With no formal clinical guidelines in place, diagnosis and treatment of APS is largely based on consensus and expert opinion. Patients' unmet need refers to the understanding of the disease and its clinical picture and implications, the need of education for patients, family members and healthcare providers, as well as to the development of monitoring pathways involving multiple healthcare providers. |
publishDate |
2018 |
dc.date.none.fl_str_mv |
2018 2018-01-01T00:00:00Z 2019-10-11T15:38:13Z |
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/10400.17/3331 |
url |
http://hdl.handle.net/10400.17/3331 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
RMD Open. 2018 Oct 18;4(Suppl 1):e000785. 10.1136/rmdopen-2018-000785 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
BMJ Publishing Group |
publisher.none.fl_str_mv |
BMJ Publishing Group |
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 |
instname_str |
Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
instacron_str |
RCAAP |
institution |
RCAAP |
reponame_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
collection |
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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