Coordinating a person-centred pathway to high quality care for people with rare autoimmune disorders

Primary Sjögren’s syndrome is associated with significant direct and indirect costs, and represent a significant impact upon the healthcare system.

Primary Sjögren’s syndrome is a rare autoimmune disease affecting up to 0.4% of the adult female population and leading to severe dryness of the mouth and eyes and often associated with disabling fatigue and systemic manifestations. Patients require input from multiple specialities and diagnosis is often delayed.

In this webinar we describe how we have set up a multidisciplinary clinic run by rheumatologists and attended by oral medicine and ophthalmology to streamline the diagnostic pathway and reduce frequency of visits. Key components are access to a slit lamp for eye examination, provision of a lip biopsy clinic, and standardised histopathological reporting following guidelines we have developed. Patients now have access to a focused, coordinated diagnostic service, coordinated care, and opportunities to participate in research.

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