UK and Ireland Vasculitis Rare Disease Group (UKIVas) Registry
The UKIVAS Registry is a collaboration between patients, clinicians and scientists to create the first comprehensive database of vasculitis patients in the UK and Ireland.
What does the UKIVas Resgistry do?
The UKIVAS Registry collects information on patients with systemic vasculitis across the UK and Ireland to help improve understanding of vasculitis and therefore improve diagnosis, treatment, and long-term care.
Why do we need a UKIVas Registry? As vasculitis is a rare disease we need to link many hospitals together to assemble a group large enough to allow us to ask and answer important questions about what causes the disease, who is likely to relapse, who we can stop treatment on and what the best treatment is.
What is the vision of the UKIVas Registry?
- To ensure that clinicians, providers and commissioners working in the field of vasculitis have robust, relevant data to inform decision making for vasculitis services and patients. This includes generating robust outcome data stratified by centre, region and mode of treatment.
- To provide vasculitis-focused researchers with a rich source of data acquired through large scale collaborative working. This will aid future academic research programmes and facilitate future large scale clinical trials in this rare disease.
What is the aim of the UKIVas Registry?
- To host and maintain a resilient database, accessible to certified users via a web interface.
- To ensure that ethical principles, data governance and privacy protection are foremost in building this database.
- To forge a sustainable path by aligning and integrating with NHS systems.
- To support audit functions to allow benchmarking of vasculitis care and to assist in management of high cost medication use.
- To provide validated longitudinal data for use in ethically approved research studies.
- To align with the RaDaR database and international vasculitis registry initiatives to maximise interoperability.
How can I contribute to the UKIVAS Registry?
Clinicians can contribute data through participating centres.
To learn more or access the registry:
Research & Registry
- UKIVas runs clinical studies and collaborates on research to improve diagnosis, treatment, and long-term outcomes for vasculitis.
- By combining data from many centres, the registry helps researchers better understand vasculitis and improve diagnosis, treatment, and long-term care.
- Patients are usually invited through their hospital team. Speak to your consultant or research nurse if interested.
- The UKIVas Registry is a national database collecting information on patients across the UK and Ireland to improve understanding and treatment. Visit the UKIVAS Registry website: https://ukivas.ndorms.ox.ac.uk/
- No. Participation is voluntary and will not affect your care.
- Data is handled securely and anonymised. It is used to support research, improve care, and inform healthcare services.
Explore more ways to get involved
Discover further opportunities to support UKIVas, join research initiatives, contribute expertise, or engage with our community.
Contact UKIVas
Get in touch with our team for enquiries, collaboration opportunities, or support accessing information related to vasculitis research.