Welcome to Sjögren´s registry
The United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR) is a national research biobank of people with Primary Sjögren's Syndrome.
The aim is to facilitate clinical trials and academic research studies in order to improve our understanding of what causes Primary Sjögren's Syndrome and to find better, more effective treatment for people with this condition.
The project is an initiative of the United Kingdom Sjögren's Interest Group (UKSIG) and funded by the Medical Research Council.
The United Kingdom Sjögren's Interest Group (UKSIG) is a national network of doctors and allied healthcare professionals across the UK with the aims to promote good clinical care and facilitate research and communication among clinicians and researchers in Sjögren's syndrome.
The membership of UKSIG has grown considerably since its inception and now has 50 members from 32 hospitals (plus a patient representatives from the British Sjögren's Syndrome Association (BSSA)).
The UKSIG has co-ordinated several national multi-centre clinical studies in Primary Sjögren's Syndrome and developed several key standardised clinical outcome measures for Primary Sjögren's Syndrome including the Sjögren's Syndrome Inventory (SSI), Profile of Fatigue and Discomfort (PROFAD), Sjögren's syndrome clinical activity index (SCAI) and Sjögren's syndrome damage index (SSDI).
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