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<p>Cohort studies are essential for elucidating disease progression, guiding research priorities, and identifying gaps in diagnosis and treatment. This manuscript presents the protocol and preliminary findings of the Brazilian Registry on Sjögren’s Disease (BRAS), a national, prospective cohort supported by the Brazilian Society of Rheumatology (SBR). BRAS aims to collect comprehensive data on patients with Sjögren’s Disease (SjD) who meet the 2002 AECG and/or 2016 ACR-EULAR classification criteria, fostering high-quality research initiatives. Data collection is conducted via REDCap and includes demographic, laboratory, and clinical parameters such as disease activity (ESSDAI), damage (SSDDI), comorbidities, cardiovascular risk (Framingham score), labial salivary gland biopsy, salivary gland ultrasound, and therapeutic approaches. Patient-reported outcome measures (PROMs) include ESSPRI, PROFAD, HADS, ESE, IPAQ-SF, and EQ-5D. To date, 1,082 patients have been enrolled (mean age 55.3 ± 13.3 years; 96.6% women). Major findings include xerostomia (93%), xerophthalmia (92%), positive lip biopsy (83.6%), anti-Ro/SSA antibodies (77%), anti-La/SSB (43%), systemic manifestations (71.3%, ESSDAI 4.8 ± 5.8), and organ damage (86.9%, SSDDI 2.3 ± 1.6). Average disease duration was 7 ± 6.3 years with a diagnostic delay of 3.7 years. Treatments included corticosteroids (18%), hydroxychloroquine (46%), immunosuppressants (38%), and rituximab (6.5%). Common comorbidities were hypertension (34.9%), obesity (30.2%), dyslipidemia (29.7%), fibromyalgia (26%), osteoarthritis (24%), hypothyroidism (23.6%), diabetes (12.9%), and cancer (12.7%). Patients reported high symptom burden (ESSPRI 5.4 ± 2.4), anxiety (48%), depression (40%), low quality of life (63.6 ± 22.2), and insufficient physical activity (only 32.7% exercised regularly). Findings highlight the need for a multidisciplinary care program. The findings reveal diagnostic delays, limited healthcare access, high symptom burden, systemic involvement, poor mental health and highlight the need for a multidisciplinary care program. The next phase involves establishing a biorepository for biological samples.</p><p> <?noindent??><b>Clinical trial number</b> Not applicable.</p>

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Brazilian Registry of Sjögren’s Disease (BRAS): a full picture of Sjögren’s disease in Brazil

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月27日

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  • Valéria Valim,
  • Samira Tatiyama Miyamoto,
  • Fabiola Reis de Oliveira,
  • Érica Vieira Serrano,
  • Laura Caldas dos Santos,
  • Roberta de Almeida Pernambuco,
  • Simone Appenzeller,
  • Juliana Markus,
  • Leandro Augusto Tanure,
  • Maria Lúcia Lemos Lopes,
  • Rafael Coradin,
  • Aysa César Pinheiro,
  • Vanessa Hax,
  • Aiessa Zanchett Fedrigo,
  • Sandra Lúcia Euzébio Ribeiro,
  • Karina Gatz Capobianco,
  • Giovanna Sant’Ana Petterle,
  • Alisson Pugliesi,
  • Débora Cerqueira Calderaro,
  • Ketty Lysie Libardi Lira Machado,
  • Paula Regina Toche dos Santos,
  • Nathalia de Carvalho Sacilotto,
  • Anna Maria de Senna Migueletto,
  • Diego Ustárroz Cantali,
  • Vitalina de Souza Barbosa,
  • Mateus Maia Marzola,
  • Eduardo Melani Rocha,
  • Ricardo Machado Xavier,
  • Virgínia Fernandes Moça Trevisani

摘要

Cohort studies are essential for elucidating disease progression, guiding research priorities, and identifying gaps in diagnosis and treatment. This manuscript presents the protocol and preliminary findings of the Brazilian Registry on Sjögren’s Disease (BRAS), a national, prospective cohort supported by the Brazilian Society of Rheumatology (SBR). BRAS aims to collect comprehensive data on patients with Sjögren’s Disease (SjD) who meet the 2002 AECG and/or 2016 ACR-EULAR classification criteria, fostering high-quality research initiatives. Data collection is conducted via REDCap and includes demographic, laboratory, and clinical parameters such as disease activity (ESSDAI), damage (SSDDI), comorbidities, cardiovascular risk (Framingham score), labial salivary gland biopsy, salivary gland ultrasound, and therapeutic approaches. Patient-reported outcome measures (PROMs) include ESSPRI, PROFAD, HADS, ESE, IPAQ-SF, and EQ-5D. To date, 1,082 patients have been enrolled (mean age 55.3 ± 13.3 years; 96.6% women). Major findings include xerostomia (93%), xerophthalmia (92%), positive lip biopsy (83.6%), anti-Ro/SSA antibodies (77%), anti-La/SSB (43%), systemic manifestations (71.3%, ESSDAI 4.8 ± 5.8), and organ damage (86.9%, SSDDI 2.3 ± 1.6). Average disease duration was 7 ± 6.3 years with a diagnostic delay of 3.7 years. Treatments included corticosteroids (18%), hydroxychloroquine (46%), immunosuppressants (38%), and rituximab (6.5%). Common comorbidities were hypertension (34.9%), obesity (30.2%), dyslipidemia (29.7%), fibromyalgia (26%), osteoarthritis (24%), hypothyroidism (23.6%), diabetes (12.9%), and cancer (12.7%). Patients reported high symptom burden (ESSPRI 5.4 ± 2.4), anxiety (48%), depression (40%), low quality of life (63.6 ± 22.2), and insufficient physical activity (only 32.7% exercised regularly). Findings highlight the need for a multidisciplinary care program. The findings reveal diagnostic delays, limited healthcare access, high symptom burden, systemic involvement, poor mental health and highlight the need for a multidisciplinary care program. The next phase involves establishing a biorepository for biological samples.

Clinical trial number Not applicable.