United Kingdom primary Sjögren's syndrome registry-a united effort to tackle an orphan rheumatic disease

Wan Fai Ng; Simon J. Bowman; Bridget Griffiths

doi:10.1093/rheumatology/keq240

United Kingdom primary Sjögren's syndrome registry-a united effort to tackle an orphan rheumatic disease

Wan Fai Ng
, Simon J. Bowman
, Bridget Griffiths

Research output: Contribution to journal › Review article › peer-review

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.

Original language	English
Pages (from-to)	32-39
Number of pages	8
Journal	Rheumatology
Volume	50
Issue number	1
DOIs	https://doi.org/10.1093/rheumatology/keq240
Publication status	Published - Jan 2011
Externally published	Yes

Keywords

Patient cohort
Primary Sjögren's syndrome
Registry
Research biobank

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10.1093/rheumatology/keq240

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title = "United Kingdom primary Sj{\"o}gren'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 Sj{\"o}gren'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.",

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AU - Ng, Wan Fai

AU - Bowman, Simon J.

AU - Griffiths, Bridget

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N2 - 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.

AB - 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.

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M3 - Review article

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AN - SCOPUS:79951684127

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United Kingdom primary Sjögren's syndrome registry-a united effort to tackle an orphan rheumatic disease

Abstract

Keywords

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