205. The UK Primary Sjögren’s Syndrome Registry (UKPSSR): A Valuable Resource for Future Sjögren’s Syndrom Research

Abstract

Background: Primary SS (pSS) is the second most common systemic autoimmune disease after RA. 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-characterized 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, the majority of whom fulfilled the AECG criteria (Table 1). Extensive subjective and objective clinical data were collected for all patients including demographics, co-morbidity, 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 on a subset of the patients. Age-, sex- and ethnicitymatched healthy controls were also recruited. Finally, blood samples, comprising peripheral blood mononuclear cells, whole blood DNA, whole RNA and serum were bio-banked for all of the patients and controls of the cohort. Results: The UKPSSR is a national cohort and research biobank of approximately 700 clinically well-characterized pSS patients and around 350 matched healthy controls (http://www.sjogrensregistry. org/index.php). To date the cohort has been used to study several aspects of pSS pathogenesis and its clinical features, including healthrelated utility values, autonomic symptom burden and genetic variation in pSS. 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.