Rare Disease Group
The Vasculitis Rare Disease Group has developed from the UK and Ireland Vasculitis registry initiative UKIVAS. The group members represent Vasculitis units across the UK and participate in Vasculitis research and care.
We have a number of aims:
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To promote collaboration and sharing of expertise and resources in clinical research
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To develop guidelines for the management of Vasculitis
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To develop a nationwide registry of anonymized demographic, treatment and outcome data for patients with Vasculitis in the UK and Ireland
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To develop high quality patient and clinician information via the Rare Renal and Vasculitis UK websites
- To link with interested patient groups, research collaborations and industry.
Lockwood Club History
The Lockwood club developed in the 1990s as a series of clinical meetings in East Anglia. The meetings were hosted on a rotating basis by Dr Martin Lockwood in Cambridge, Professor David GI Scott in Norwich and Dr Richard Watts in Ipswich. The first meeting was held in 1995. Each meeting was devoted to case reports around a specific theme, followed by an invited speaker and a dinner.
Two national meetings on ‘Aims of Therapy’ were organized in 1999 and 2004. The first in 1999 was marred by the tragic death of Martin Lockwood immediately prior to the meeting but it was still held.
Following the return of Dr David Jayne to Addenbrooke’s the club was revived and named the ‘Lockwood Club’ in memory of Martin.
Since then the club has grown in size and scope and is now known as UKIVAS, The Vasculitis Rare Disease Group of UK and Ireland. Successful meetings have been held in Oxford, London, Manchester and most recently in Cardiff.
The meetings are always open to those interested in Vasculitis care and research.
The Vasculitis Rare Disease Group evolved from UKIVAS, a steering group set up to develop the national Vasculitis registry.
Our aims are:
- to create a database of Vasculitis patients in the British Isles
- to build-up longitudinal clinical data to create a picture of the patient’s clinical course
- to link the clinical information to biological samples
This will enable large-scale genetics and epidemiology studies, identify cohorts of patients to recruit for clinical trials and biomarker studies, allow multi-centre audit of novel biological therapies and inform logical service delivery.
There are currently 27 UK and Ireland sites involved in enrolling patients in the UKIVAS database.
Please note that, to make the process more efficient, all UKCRN accruals for the UKIVAS study will now be generated automatically from central database records. There is therefore now no need to return accrual lists to Ruth Yang. Note that patients without data recorded via the UKIVAS app will not be included in UKCRN returns.
RDG Vasculitis Guidelines Delphi Study
The management of Vasculitis patients is increasingly complex. It is therefore important that clinicians have up-to-date recommendations about treatment. The Vasculitis RDG and the British Society for Rheumatology are currently undertaking a Delphi study to produce guidelines on specific components of care. This includes prevention of co-morbidities. This project is nearing completion and the guidelines will be published here shortly.
The group members have a long history of collaboration with the European Vasculitis Study Group (EUVAS), European League Against Rheumatism (EULAR), the Lockwood club (the UK national Vasculitis society), the European Vasculitis Genetics Consortium and UKIVAS.
The Twitter feed for UKIVAS is @UKIVAS.
RDG Members
- Chair: Steve McAdoo
- Governance: Anthea Craven
- Registry: Raashid Luqmani
Specialist Representation
- ANP Lead: Sarah Hardy
- Comms: Nina Brown (Website); Sian Griffin (Social Media & Twitter)
- European Reference Networks: Jackie Andrews
- EUVAS: David Jayne
- Industry: Lars Erwig
- Neurology: David Hunt
- NHS Engagement: Peter Lanyon
- Paeds: Paul Brogan
- Patients: John Mills, Lynn Laidlaw
- RaDaR: Oliver Flossman
- Renal: Alan Salama
- Research: Paul Lyons (SVV), Ann Morgan (LVV)
- Rheum: Jo Robson
- Scotland: Bean Dhaun
- Secretariat: Hugh Cahill
- Trainees: Fiona Pearce
External agencies and funders
- Renal Association
- Rare Disease Committee
- RaDaR – NHS access only
- PatientView
- British Society for Rheumatology
- British Association of Paediatric Nephrology
- Arthritis Research UK
- Kidney Research UK
- Vasculitis UK
- The Lauren Currie Twilight Foundation
Group Structure
None reported
