TY - JOUR
T1 - Antiphospholipid syndrome
T2 - State of the art on clinical practice guidelines
AU - Limper, Marteen
AU - Scirè, Carlo Alberto
AU - Talarico, Rosaria
AU - Amoura, Zahir
AU - Avcin, Tadej
AU - Basile, Martina
AU - Burmester, Gerd
AU - Carli, Linda
AU - Cervera, Ricard
AU - Costedoat-Chalumeau, Nathalie
AU - Doria, Andrea
AU - Dörner, Thomas
AU - Fonseca, João Eurico
AU - Galetti, Ilaria
AU - Hachulla, Eric
AU - Launay, David
AU - Lourenco, Filipa
AU - Macieira, Carla
AU - Meroni, Pierluigi
AU - Montecucco, Carlo Maurizio
AU - Moraes-Fontes, Maria Francisca
AU - Mouthon, Luc
AU - Nalli, Cecilia
AU - Ramoni, Veronique
AU - Tektonidou, Maria
AU - Van Laar, Jacob M.
AU - Bombardieri, Stefano
AU - Schneider, Matthias
AU - Smith, Vanessa
AU - Vieira, Ana
AU - Cutolo, Maurizio
AU - Mosca, Marta
AU - Tincani, Angela
N1 - Publisher Copyright:
© 2018 Author(s) (or their employer(s)).
PY - 2018/10/1
Y1 - 2018/10/1
N2 - 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.
AB - 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.
KW - antiphospholipid syndrome
KW - clinical practice guidelines
KW - ERN ReCONNET
KW - European reference networks
KW - unmet needs
UR - https://www.scopus.com/pages/publications/85055704162
U2 - 10.1136/rmdopen-2018-000785
DO - 10.1136/rmdopen-2018-000785
M3 - Review article
C2 - 30402272
SN - 2056-5933
VL - 4
JO - RMD Open
JF - RMD Open
IS - Suppl 1
M1 - e000785
ER -