Patient Registry

The United Kingdom Primary Sjögren's Syndrome Registry (UKPSSR) is a national research biobank of people with Primary Sjögren's Syndrome.

Learn More About Sjögren's Syndrome

  • Autoimmune Nature:Sjögren's Syndrome is an autoimmune disease, meaning the body's immune system mistakenly attacks its own cells and tissues. In Sjögren's Syndrome, moisture-producing glands are primarily affected, leading to decreased production of saliva and tears.
  • Primary vs. Secondary:There are two types of Sjögren's Syndrome: primary and secondary. Primary Sjögren's Syndrome occurs by itself, while secondary Sjögren's Syndrome occurs alongside other autoimmune diseases, such as rheumatoid arthritis or lupus.
  • Common Symptoms:The hallmark symptoms of Sjögren's Syndrome are dry mouth (xerostomia) and dry eyes (keratoconjunctivitis sicca). These symptoms can lead to difficulty swallowing, speaking, and wearing contact lenses.
  • Other Potential Symptoms:Beyond dry eyes and mouth, Sjögren's Syndrome may also cause joint pain, skin rashes, persistent dry cough, and fatigue. It can affect other organs of the body, including the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.
  • Diagnosis:Diagnosing Sjögren's Syndrome can be challenging and often requires a combination of tests, including blood tests for specific antibodies, Schirmer's test to measure tear production, salivary gland function tests, and sometimes a lip biopsy to examine glandular tissue.
  • Prevalence and Demographics:Sjögren's Syndrome affects millions of people worldwide, with a higher prevalence among women than men. It typically manifests in people aged 40 and older, but it can affect individuals of any age.
  • Treatment Options:While there is no cure for Sjögren's Syndrome, treatments focus on relieving symptoms. These may include artificial tears, saliva substitutes, medications to stimulate saliva production, and immune-suppressing drugs for those with more severe symptoms.

Partners

We are extremely proud of the partners that we have the pleasure of working alongside. We are grateful for the support and collaboration that we have received and will continue to value collaboration and open communication above all else.

Newcastle UniversityCambridge University