“If I have Sjögren's syndrome, I want to know it as early as possible”: The perspective of first-degree relatives of patients with Sjögren's syndrome from an international survey - 11/07/24
Doi : 10.1016/j.jbspin.2024.105695
Alessia Alunno a, 1, ⁎ 
, Francesco Carubbi a, 1, Valentin Ritschl b, c, Divi Cornec d, Sabine Zenz e, Ana Vieira f, Katy Antonopoulou g, Loukas Chatzis h, Vasco C. Romão i, j, Athanasios Tzioufas h, Matilde Bandeira i, j, Martin H. Stradner e
, Francesco Carubbi a, 1, Valentin Ritschl b, c, Divi Cornec d, Sabine Zenz e, Ana Vieira f, Katy Antonopoulou g, Loukas Chatzis h, Vasco C. Romão i, j, Athanasios Tzioufas h, Matilde Bandeira i, j, Martin H. Stradner e a Department of Clinical Medicine, Life, Health & Environmental Sciences, Internal Medicine and Nephrology Division, University of L’Aquila, ASL1 Avezzano-Sulmona-L’Aquila, Piazzale S. Tommasi 1, L’Aquila, Italy
b Institute for Outcomes Research, Medical University of Vienna, Vienna, Austria
c Ludwig Boltzmann Institute for Arthritis and Rehabilitation, Vienna, Austria
d Service de Rhumatologie, hôpital de la Cavale Blanche, Brest University, Brest, France
e Division of Rheumatology and Immunology, Department of Internal Medicine, Medical University of Graz, Graz, Austria
f Liga Portuguesa Contra as Doenças Reumáticas, Núcleo Síndrome de Sjögren, ePAG Representative for Sjögren's Syndrome, ERN-ReCONNET Lisbon, Portugal
g Sjogren Europe, Gland, Switzerland
h Pathophysiology Department, Athens School of Medicine, National and Kapodistrian University of Athens, Athens, Greece
i Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal
j Rheumatology Research Unit, Instituto de Medicina Molecular João Lobo Antunes, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal
*Corresponding author.
Highlights |
• | First degree relatives (FDRs) of patients with Sjögren's syndrome (SS) are keen on being involved in pre-clinical research studies. |
• | Absence of SS symptoms and economic concerns are the main barriers preventing SS FDRs to engage in preclinical research. |
• | Preclinical research in SS seems feasible and well accepted by target individuals. |
Keywords : Sjögren's syndrome, First-degree relatives, Early diagnosis, Autoimmune disease, Survey
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© 2024
Société française de rhumatologie. Publié par Elsevier Masson SAS. Tous droits réservés.
Vol 91 - N° 4
Article 105695- juillet 2024 Retour au numéro
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