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RMD Open. 2018 Oct 18;4(Suppl 1):e000785. doi: 10.1136/rmdopen-2018-000785. eCollection 2018.

Antiphospholipid syndrome: state of the art on clinical practice guidelines.

Author information

1
Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
2
Section of Rheumatology, Department of Medical Sciences, University of Ferrara, Ferrara, Italy.
3
Rheumatology Unit, AOU Pisana, Pisa, Italy.
4
Department of Internal Medicine, Hospital Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France.
5
Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital, University Medical Centre Ljubljana, Ljubljana, Slovenia.
6
Lissone, Lissone, Italy.
7
Department of Rheumatology and Clinical Immunology, Charité University Hospital Berlin, Berlin, Germany.
8
Department of Autoimmune Diseases, Hospital Clínic de Barcelona, Barcelona, Spain.
9
Service de Médecine Interne, Hôpital Cochin, Centre de Référence Maladies systémiques Autoimmunes Rares d'Ile de France, Assistance Publique-Hôpitaux de Paris (AP-HP), Université Paris Descartes, Paris, France.
10
Rheumatology Unit, Department of Medicine, AO Padova and University of Padua, Padua, Italy.
11
Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal.
12
Federation of European Scleroderma Associations (FESCA), Milan, Italy.
13
Département de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Systémiques et Auto-Immunes Rares du Nord-Ouest (CERAINO), LIRIC, INSERM, Univ. Lille, CHU Lille, Lille, France.
14
Auto-immune Disease Unit, Hospital de Curry Cabral, Centro Hospitalar de Lisboa Central, EPE, Lisbon, Portugal.
15
Division of Rheumatology, ASST.G Pini, Department of Clinical Sciences and Community Health, University of Milan and Istituto Auxologico Italiano, Milan, Italy.
16
Division of Rheumatology, University and IRCCS Policlinico S. Matteo Foundation, Pavia, Italy.
17
Rheumatology and Clinical Immunology Unit, Civil Hospital, Brescia, Italy.
18
Joint Rheumatology Academic Program, First Department of Propaedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.
19
University of Pisa, Pisa, Italy.
20
Department of Rheumatology, Universitätsklinikum Düsseldorf, Düsseldorf, Germany.
21
Department of Rheumatology, Ghent University Hospital, Ghent, Belgium.
22
Department of Internal Medicine, Ghent University, Ghent, Belgium.
23
Liga Portuguesa Contra as Doenças Reumáticas, Núcleo Síndrome de Sjögren, Lisbon, Portugal.
24
Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy.
25
Rheumatology Unit, University of Pisa, Pisa, Italy.

Abstract

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.

KEYWORDS:

ERN ReCONNET; European reference networks; antiphospholipid syndrome; clinical practice guidelines; unmet needs

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