Sjogren's Syndrome Research Database
Research type
Research Database
IRAS ID
262675
Contact name
Wan-Fai Ng
Contact email
Research summary
Sjogren's Syndrome Research Database
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
19/NE/0253
Date of REC Opinion
30 Sep 2019
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Many research projects require the use of clinical data to understand what has gone wrong in a particular disease. There are an increasing number of research projects asking for clinical data from Primary Sjogren’s patients within the hospital. This often ends up being information the doctor is already collecting and using for your clinical management. By using the information already collected during your appointments we can minimise the extra forms and tests that you need for the research project by transferring the information.
We aim to create a research database using the information you provide in clinic as part of your routine appointments. This information will have your personal details, such as your name and hospital number, removed so that the researchers outside of the NHS trust cannot identify you. This is known as pseudo-anonymised data. This pseudo-anonymised data can then be used for research studies rather than asking you to complete more questionnaires asking the same questions. We will ask you to complete a written consent form after reading the patient information leaflet.
Research programme
Despite much progress having been made in research technologies and the development of new treatments in many areas of medicine, our understanding of what causes primary Sjögren’s syndrome (PSS) remains poor and the treatments currently available for PSS proving to be limited. Therefore, we still have a lot to learn if we are to improve the care of people with PSS, and this can only be achieved through high quality research and clinical trials.
Research database title
Sjogren's Syndrome Research Database
Establishment organisation
Newcastle University
Establishment organisation address
Institute of Cellular Medicine
Newcastle University
Newcastle upon Tyne
NE2 4HH