Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne NE2 4HH, UK.
Rheumatology (Oxford). 2011 Jan;50(1):32-9. doi: 10.1093/rheumatology/keq240. Epub 2010 Aug 6.
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.
原发性干燥综合征（pSS）是一种多系统自身免疫性疾病，其患病率和对健康的经济影响可与类风湿关节炎相媲美。然而，pSS 的研究相对支持不足。创建一个大型的临床特征明确的 pSS 患者队列将为促进高质量的 pSS 研究提供催化剂和有价值的资源。在这篇综述中，我们将描述此类队列的创建以及目前正在英国建立的相关研究生物库——英国原发性干燥综合征登记处（UKPSSR）。我们将讨论该登记处设计的优缺点，并强调在登记处建立过程中遇到的关键挑战以及我们为克服这些障碍而采用的策略。最后，我们将考虑 UKPSSR 的未来发展，包括队列的利用和维护。
