title: United Kingdom Primary Sjogren's Syndrome Registry--a united effort to tackle an orphan rheumatic disease.
abstract: Primary SS (pSS) is a multi-system autoimmune disease with a prevalence and health economic impact that are comparable with RA. However, pSS research has been relatively poorly supported. The creation of a large cohort of clinically well-characterized pSS patients will provide a catalyst and valuable resources to promote high-quality pSS research. In this review, we will describe the creation of such a cohort and the associated research biobank that is currently being established in the UK--entitled United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR). We will discuss the strengths and weaknesses of the design of the registry and highlight the key challenges in the establishment of the registry and the strategies that we employ to overcome these barriers. Finally, we will consider the future development of the UKPSSR including utilization and maintenance of the cohort.
authors.affiliation: Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne NE2 4HH, UK. wan-fai.ng@ncl.ac.uk
authors.forename: Wan-Fai
authors.initials: WF
authors.lastname: Ng
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Bowman
authors.forename: Bridget
authors.initials: B
authors.lastname: Griffiths
mesh_terms: D035843:Biomedical Research / Q000639:trends; D015331:Cohort Studies; D006801:Humans; D015995:Prevalence; D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries / Q000592:standards*; D012859:Sjogren's Syndrome / Q000453:epidemiology* / Q000276:immunology; D006113:United Kingdom / Q000453:epidemiology