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PORTRESS – the PORTuguese Reuma.pt registry for Sjögren’S disease

2025-09Artigo científico Acesso aberto
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datacite.subject.sdg03:Saúde de Qualidade
dc.contributor.authorBandeira, Matilde
dc.contributor.authorSilvério-António, Manuel
dc.contributor.authorCosta, Roberto Pereira da
dc.contributor.authorLopes, Ana Rita
dc.contributor.authorSantos, Filipe Cunha
dc.contributor.authorPereira, Paulo J.
dc.contributor.authorRaimundo, Diana Belchior
dc.contributor.authorCunha, Anita
dc.contributor.authorOliveira, Cláudia Pinto
dc.contributor.authorDuarte, Ana Catarina
dc.contributor.authorDias, João
dc.contributor.authorSantos, Mariana Emília
dc.contributor.authorGonçalves, Maria João
dc.contributor.authorMoniz, Ana Catarina
dc.contributor.authorMaduro, Ana Isabel
dc.contributor.authorLuís, Mariana
dc.contributor.authorValido, Ana
dc.contributor.authorOliveira, Margarida
dc.contributor.authorBrites, Luísa
dc.contributor.authorTenazinha, Catarina
dc.contributor.authorVieira, Ana
dc.contributor.authorKhmelinskii, Nikita
dc.contributor.authorBarcelos, Filipe
dc.contributor.authorFonseca, João Eurico
dc.contributor.authorRomão, Vasco C.
dc.date.accessioned2025-12-23T10:17:12Z
dc.date.available2025-12-23T10:17:12Z
dc.date.issued2025-09
dc.descriptionThis work has been supported by SPCare.
dc.description.abstractAims: Sjögren's disease (SjD) is a complex disease with a wide variety of manifestations and outcomes. We recently created PORTRESS, the Portuguese SjD registry within Reuma.pt. We aim to describe this registry and characterize our national cohort. Methods: We included patients with a clinical diagnosis of SjD, registered in PORTRESS up to November 2023. Demographic, clinical, treatment, and patient-reported outcomes (PROs) data were collected. Variables were compared according to parametric or non-parametric tests, as applicable. Results: A total of 1375 patients were included. Patients fulfilled AECG 2002 or ACR/EULAR 2016 classification criteria in 62% and 57% of cases, respectively, although more than half didn't have a complete assessment of all items. Of note, the vast majority (93%) had both SjD manifestations and a positive anti-Ro and/or minor salivary gland biopsy. Most patients (88%) exhibited at least one active ESSDAI domain during the course of their disease. Hydroxychloroquine and corticosteroids were used in 52% and 30% of patients, while other immunosuppressants and pilocarpine were used in 12% and 18% of cases, respectively. The mean ESSDAI at inclusion was 3.0±4.4 (range 0-42), and, at the last follow-up, 2.1±3.7 (0-31), corresponding to a significant decrease. Dryness, pain, and fatigue PROs were scored high, with a significant increase from baseline to follow-up. Conclusion: PORTRESS is a web-based SjD registry facilitating efficient nationwide data storage. It enables research, trial recruitment, and a comprehensive longitudinal view of patients' evolution. Although systemic activity improved over follow-up, symptom burden worsened when compared to baseline, underlining a major unmet need in SjD.eng
dc.identifier.citationBandeira M, Silvério-António M, Costa RP, Lopes AR, Santos FC, Gonçalves MJ, et al. PORTRESS: the PORTuguese Reuma.pt registry for Sjögren'S disease. ARP Rheumatol. 2025;4(3):183-93.
dc.identifier.doi10.63032/bkra9238
dc.identifier.issn2795-4552
dc.identifier.urihttp://hdl.handle.net/10400.21/22404
dc.language.isoeng
dc.peerreviewedyes
dc.publisherSociedade Portuguesa de Reumatologia
dc.relation.hasversionhttps://www.arprheumatology.com/section.php?id=1770
dc.relation.ispartofARP Rheumatology
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectbDMARDs
dc.subjectDisease activity
dc.subjectHealthcare quality
dc.subjectSjogren’s syndrome
dc.subjectDMARDs
dc.subjectEpidemiology
dc.subjectPORTRESS
dc.subjectPortugal
dc.titlePORTRESS – the PORTuguese Reuma.pt registry for Sjögren’S diseaseeng
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage193
oaire.citation.issue3
oaire.citation.startPage183
oaire.citation.titleARP Rheumatology
oaire.citation.volume4
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85

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