Vasculitis Ireland Network
Primary systemic small vessel vasculitis (PSV) refers to a group of rare autoimmune multi-system disorders with an annual incidence of 15/million and prevalence of approximately 2/10,000 and occurs primarily in adults with a median age of onset of 62.
It presents acutely to a wide range of medical and surgical specialties and frequently presents a diagnostic dilemma as many clinicians will be unfamiliar with the condition, with delays in diagnosis of 6-12 months typical. Consequently, organ destruction progresses such that 30% end up with end-stage kidney disease and intensive care unit level care is often required due to multi-organ dysfunction.
However, early diagnosis of PSV and initiation of appropriate immunosuppressive therapy can substantially improve the associated morbidity and mortality, leading to a significant reduction in associated healthcare utilization costs. While effective treatments are available, PSV is a chronic relapsing condition with no cure that requires coordinated long term multi-disciplinary input. In the “EULAR recommendations for management of primary small and medium vessel vasculitis” the first recommendation is to manage this condition in conjunction with centres of expertise with integrated expertise to manage relapses and complications of therapy.
To address this unmet need in Ireland and improve patient care, five centres across the country have developed a network of specialist units in collaboration with Vasculitis Ireland Awareness, the national vasculitis patient organisation. This “VINE” network is comprised of dedicated multi-disciplinary centres that provide a coordinated care path from diagnosis to relapse and on to long term remission, and provide access to clinical trials for patients with PSV. The five centres maintain close ties and difficult cases are often discussed in a cross centre forum.
To provide a foundation for developing the service in Ireland and to support translational Vasculitis research, the VINE network has established the Irish RKD Registry and Biobank which seeks to enrol all 900 patients in Ireland with PSV, providing a rich longitudinal clinical database. This is linked to one of the most complete PSV biobanks in the world based in Trinity College Dublin. The network is closely aligned with UKIVAS, the Vasculitis Rare Disease Group of the UK and Ireland. All patients enrolled in the Irish registry are also entered in the UKIVAS registry, the largest PSV registry in the world. In addition, VINE is linked to the European Vasculitis Society.
- Coordinating unit: Tallaght University Hospital and St James's Hospital
Lead clinician: Prof. Mark Little
- St James’s Hospital, Department of Immunology
Lead clinician: Dr. Niall Conlon
- St Vincent’s University Hospital, Department of Rheumatology
Lead clinician: Dr. Eamonn Molloy, Dr John Holian
- Our Lady's Children's Hospital, Crumlin, Department of Rheumatology
Lead clinician: Dr Orla Killeen
- Cork University Hospital, Department of Nephrology
Lead clinician: Dr. Michael Clarkson
- University Hospital Galway, Department of Nephrology
Lead clinician: Prof Matthew Griffin
- Southern Health & Social Care Trust, Department of Nephrology and Rheumatology
Lead clinician: Dr Neal Morgan, Dr John Harty, Dr Nicola Maiden
- Vasculitis Ireland Awareness, Irish Vasculitis patient organisation
Chairperson: Ms Julie Power
VINE coordinator: Ms Pamela O’Neil (firstname.lastname@example.org)