• Develop new classification criteria for Sjögren’s syndrome (SS; since then renamed Sjögren’s disease)
• Better characterize the SS phenotype and genotype
• Establish an SS data and specimen repository to support future research, including genetic studies, by investigators worldwide 

 

The Alliance, initially led by UCSF Professors Troy Daniels and John Greenspan, then subsequently by Professors Caroline Shiboski and Lindsey Criswell, built an international registry of uniform clinical data and biospecimens that is available to scientists all over the world, with the intent of improving understanding and treatment of Sjögren’s disease. SICCA is a multidisciplinary effort that included dentists (oral medicine and oral pathology specialists), ophthalmologists, rheumatologists, a geneticist, an epidemiologist, and statisticians. The new classification criteria for SS developed by the SICCA group was provisionally approved by the American College of Rheumatology (ACR) < PMCID: PMC3349440>, which paved the way to a definitive set of classification criteria approved by both ACR and the European League Against Rheumatism (EULAR) in 2016 < PMCID: PMC5650478>. A genome wide association study (GWAS) was also performed within the SICCA cohort that revealed genetic heterogeneity of Sjögren’s disease according to ancestry < PMCID: PMC5449251>.

 

In 2020, the Sjögren’s International Collaborative Clinical Alliance Next Generation Studies (SICCA-NextGen) was launched with new funding from NIDCR (U01DE028891), utilizing existing infrastructure and an expanded team of experts to continue our exploration of the pathogenesis of Sjögren’s disease and identify therapeutic pathways, and new biomarkers. The SICCA dissemination plan is being continued, and the SICCA repository and data registry will soon be enhanced with “omics” data generated as part of SICCA-NextGen. Please address any questions about our dissemination plan to Caroline Shiboski (PI) at caroline.shiboski@ucsf.edu