United Kingdom Primary Sjogren's Syndrome Registry
Research type
Research Tissue Bank
IRAS ID
149333
Contact name
Wan-Fai Ng
Contact email
Research summary
United Kingdom Primary Sjogren's Syndrome Registry
REC name
North West - Haydock Research Ethics Committee
REC reference
09/H1010/19+5
Date of REC Opinion
17 Apr 2014
REC opinion
Favourable Opinion
Data collection arrangements
The anonymised (i.e. without personal information) biological samples will be stored in a secured laboratory at Newcastle University. The anonymised clinical data will be stored in a password-protected electronic database on a password-protected computer at the Newcastle upon Tyne Hospitals NHS Foundation Trust.
Biological samples and clinical data will only be collected after informed written consent has been obtained.Research programme
The UKPSSR supports a wide range of research projects in primary Sjogren's syndrome (PSS) conducted by research organisations in the UK and abroad. The types of research projects include basic science and clinical research. The key areas of research include: 1. Pathogenesis of PSS (in particularly the genetic, immunological and neuroendocrine basis of the disease) 2. Understanding the relationships between biological changes and clinical manifestations of PSS 3. Mechanisms and management of fatigue in PSS 4. Mechanisms of lymphoma development in PSS 5. Mechanisms of autonomic dysfunction in PSS 6. The role of ultrasound and other imaging techniques (e.g. MRI) in the assessment of salivary gland function and diagnosis of PSS 7. The assessment and management of dry eyes 8. Epidemiological (including long-term outcomes), health-economic and health-related quality of life studies 9. Identify biomarkers for diagnosis, disease assessment, classification, and prediction of treatment responses.
RTBTitle
United Kingdom Primary Sjogren's Syndrome Registry
Establishment organisation
Newcastle University
Establishment organisation address
Newcastle Biobank, Medical School
Framlington Place
Newcastle upon Tyne
NE2 4HH