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

Deborah Symmons; 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

Deborah Symmons, Wan Fai Ng, Simon J. Bowman, Bridget Griffiths

Research output: Contribution to journal › 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. © The Author 2010. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved.

Original language	English
Pages (from-to)	32-39
Number of pages	7
Journal	Rheumatology
Volume	50
Issue number	1
DOIs	https://doi.org/10.1093/rheumatology/keq240
Publication status	Published - Jan 2011

Keywords

Patient cohort
Primary Sjögren's syndrome
Registry
Research biobank

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10.1093/rheumatology/keq240

http://rheumatology.oxfordjournals.org/content/50/1/32.full.pdf

Cite this

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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. {\textcopyright} The Author 2010. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved.",

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author = "Deborah Symmons and Ng, {Wan Fai} and Bowman, {Simon J.} and Bridget Griffiths",

note = "G0800629, Medical Research Council, United KingdomDPMS is a member of the UKPSSR group",

year = "2011",

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doi = "10.1093/rheumatology/keq240",

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AU - Symmons, Deborah

AU - Ng, Wan Fai

AU - Bowman, Simon J.

AU - Griffiths, Bridget

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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. © The Author 2010. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved.

KW - Patient cohort

KW - Primary Sjögren's syndrome

KW - Registry

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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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