Format

Send to

Choose Destination
See comment in PubMed Commons below
Rheumatology (Oxford). 2011 Jan;50(1):32-9. doi: 10.1093/rheumatology/keq240. Epub 2010 Aug 6.

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

Author information

1
Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne NE2 4HH, UK. wan-fai.ng@ncl.ac.uk

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.

PMID:
20693261
DOI:
10.1093/rheumatology/keq240
[Indexed for MEDLINE]
PubMed Commons home

PubMed Commons

0 comments
How to join PubMed Commons

    Supplemental Content

    Full text links

    Icon for Silverchair Information Systems
    Loading ...
    Support Center