Katherine James, Sheryl Mitchell, Bridget Griffiths, Simon Bowman, Wan-Fai Ng and the UKPSSR Study Group
Objectives: Primary Sjögren's Syndrome (pSS) is the second most common systemic autoimmune disease after rheumatoid arthritis. However, the mechanisms of pSS pathogenesis remain poorly understood. The United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR) aims to facilitate research and improve our understanding of pSS by providing a large cohort of clinically well-characterised pSS patients and matched healthy controls. The project is an initiative of the United Kingdom Sjögren's Interest Group (UKSIG) and is funded by the Medical Research Council.
Methods: PSS patients were recruited from 30 centres across the UK. Extensive subjective and objective clinical data were collected for all patients including demographics, comorbidity, biopsy status, Schirmer's test value and treatment history. Disease activity (ESSDAI, SCAI, SSDAI) and disease damage (SDI, SSDDI) scores were calculated for all patients in the cohort. In addition, patient-reported outcomes were calculated for symptom assessment (PROFAD-SSI, ESSPRI, Epworth sleepiness scale, OGS), quality of life (EQ-5D, SF-36), and, anxiety and depression (HADS). An optional cardiovascular risk assessment was carried out for a subset of the patients. Simultaneously, age-, sex- and ethnicity-matched healthy controls were recruited. Finally, blood samples were bio-banked for all the patients and controls of the cohort.
Results: The UKPSSR is a national cohort and research biobank of approximately 700 clinically well-characterised pSS patients and around 350 matched healthy controls. http://www.sjogrensregistry.org/index.php
Conclusion: The UKPSSR cohort provides a resource to enhance our understanding of pSS through facilitating high-quality clinical and academic research. It is hoped that the UKPSSR will serve as a foundation for the formation of a more extensive collaborative research network for pSS.