Welcome to the UKIVAS Registry website

The UKIVAS (UK and Ireland Vasculitis Rare Disease Group) Registry is a collaboration between patients, clinicians and scientists to create the first comprehensive database of vasculitis patients in the UK and Ireland. The Registry contains information on patients with systemic vasculitis attending numerous centres across the UK and Ireland. Our long-term vision is that, through longitudinal data collection, we will build a granular picture of the clinical course of vasculitis in the modern era, thereby enhancing the evidence base for diagnosis and treatment of patients with vasculitis.

Our aims are to:

  1. Ensure that clinicians, providers and commissioners working in the field of vasculitis have robust and meaningful data to inform decision making for vasculitis services and patients. This includes generating robust outcome data stratified by centre, region and mode of treatment.

  2. Provide researchers working in the field of vasculitis with a rich source of data acquired through large scale collaborative working to aid future academic research programmes in this rare disease. We will facilitate future large scale research studies by enhancing identification of potential recruits to clinical trials.

We will achieve this mission by:

  1. Hosting and maintaining a resilient database, accessible to certified users via a web interface.
  2. Ensuring that ethical principles, data governance and privacy protection are foremost in building this database
  3. Forging a sustainable path by aligning and integrating with NHS systems
  4. Supporting audit functions to allow benchmarking of vasculitis care and to assist in management of high cost medication use
  5. Providing validated longitudinal data for use in ethically approved research studies
  6. Aligning with the RaDaR database and international vasculitis registry initiatives to maximise interoperability

Learn more about the UK and Ireland Vasculitis Rare Disease Group

The UK and Ireland Vasculitis Rare Disease Group represents vasculitis units across the UK and Ireland who participate in vasculitis patient care and research. Our aims are to:

  • Promote collaboration and sharing of expertise and resources in vasculitis patient care and research
  • Develop a nationwide registry of anonymized demographic, treatment and outcome data for patients with Vasculitis in the UK and Ireland (the UKIVAS Registry)
  • Develop guidelines for the management of patients with vasculitis, in collaboration with national and international vasculitis groups
  • Develop high quality patient and clinician information via the UKIVAS and Vasculitis UK websites
  • Link with interested patient groups, research collaborations and industry.

Contact us

UKIVAS Coordinating Centre

Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences

University of Oxford

Botnar Research Centre

Nuffield Orthopaedic Centre

Windmill Road



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