Vasculitis Outcomes In relation to Care ExperienceS (VOICES)

Vasculitis Outcomes In relation to Care ExperienceS (VOICES)

Duration: 01 September 2019 - 30 September 2023
Funder: Versus Arthritis
Chief investigator: Dr Rosemary Hollick
Other UoA investigators: Professor Corri Black (Aberdeen Centre for Health Data Science), Professor Louise Locock (Health Services Research Unit)
Other co-investigators: Dr Neil Basu (University of Glasgow), Professor Mark Little (Trinity College, Dublin)

Individuals with rare rheumatic diseases report an uphill struggle to navigate healthcare systems not designed to manage complex diseases. Whilst delays in receiving a diagnosis, inconsistent access to relevant expertise and uncoordinated care are not unique to rare rheumatic disease, the consequences in this group of individuals can be devastating.

A good example is systemic vasculitis, a group of devastating but treatable multi-organ illnesses caused by inflammation of the blood vessels. Across the UK there are significant differences in how these conditions are looked after. Our own pilot data from a selection of specialist centres also reveals clinically important differences in outcomes such as heart disease, stroke and infections. There is increasing momentum within the UK to implement commitments made in the UK Rare Disease Strategy, and within Europe to improve services for those with rare diseases. However, there are currently no robust studies to help us decide how best to organise and deliver services for those with adult onset rare rheumatic disease.

Further information