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United Kingdom Primary Sjogren's Syndrome Registry - a united effort to tackle an orphan rheumatic disease

Lookup NU author(s): Professor Fai NgORCiD, Dr Bridget Griffiths, Professor Marco Carrozzo



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 Sjogren'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.

Publication metadata

Author(s): Ng WF, Bowman SJ, Griffiths B, UKPSSR Study Group

Publication type: Review

Publication status: Published

Journal: Rheumatology

Year: 2011

Volume: 50

Issue: 1

Pages: 32-39

Print publication date: 01/01/2011

ISSN (print): 0080-2727

ISSN (electronic): 1662-3959


DOI: 10.1093/rheumatology/keq240