Antiphospholipid syndrome: state of the art on clinical practice guidelines

• DOI: 10.1136/rmdopen-2018-000785
• Publication Date: 2018-10-18T23:15:34Z
• Authors: Marteen Limper; Carlo Alberto Scirè; Rosaria Talarico; Zahir Amoura; Tadej Avcin; Martina Basile; Gerd Burmester; Linda Carli; Ricard Cervera; Nathalie Costedoa...; Andrea Doria; Thomas Dörner; João Eurico Fonseca; Ilaria Galetti; Eric Hachulla; David Launay; Filipa Lourenco; Carla Macieira; Pierluigi Meroni; Carlo Maurizio Mo...; Maria Francisca M...; Luc Mouthon; Cecilia Nalli; Veronique Ramoni; Maria Tektonidou; Jacob M van Laar; Stefano Bombardieri; Matthias Schneider; Vanessa Smith; Ana Vieira; Maurizio Cutolo; Marta Mosca; Angela Tincani
• Keywords: TASK-FORCE REPORT; [SDV]Life Sciences [q-bio]; unmet needs; 610; Autoimmunity; European reference network; 14TH INTERNATIONAL-CONGRESS; 03 medical and health sciences; 0302 clinical medicine; 616; Medicine and Health Sciences; MANAGEMENT; EVIDENCE-BASED RECOMMENDATIONS; ERN ReCONNET; SYSTEMIC-LUPUS-ERYTHEMATOSUS; ERN ReCONNET; European reference networks; antiphospholipid syndrome; clinical practice guidelines; unmet needs; Unmet Needs; antiphospholipid syndrome, clinical practice guidelines, ERN ReCONNET, European reference networks, unmet needs; HCC MED; Antiphospholipid Syndrome; PREVENTION; 3. Good health; European Reference Networks; EULAR RECOMMENDATIONS; THROMBOSIS; PREGNANCY; antiphospholipid syndrome; clinical practice guidelines; ERN ReCONNET; European reference networks; unmet needs; Rheumatology; Immunology and Allergy; Immunology; antiphospholipid syndrome; clinical practice guidelines; ERN ReCONNET; European reference networks; unmet needs; ANTIBODIES; Clinical Practice Guidelines; antiphospholipid syndrome; clinical practice guideline

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.