HomeRITA-Ireland In the European Union, a rare disease is defined as one that affects no more than 1 in 2,000 people. Although each individual condition is uncommon, there are an estimated 6,000–8,000 rare diseases that collectively affect around 30 million people across the EU. The field of rare diseases has long been recognised as one where European and international collaboration is essential to improve diagnosis, treatment, research, and patient outcomes, which has been progressed through creation of the European Reference Networks. ERN-RITA brings together leading European centres of expertise in the diagnosis and management of rare immunological disorders. These conditions are often complex and potentially life-threatening, requiring multidisciplinary care, advanced diagnostic assessment, and highly specialised treatments. RITA-Ireland represents patients and healthcare professionals involved in the care of people living with rare immunological diseases in Ireland, encompassing the full spectrum of conditions within these four clinical areas.  The DVA Group recognises, and is grateful for, the invaluable support of the Adelaide Health Foundation.
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Centres- RITA-Ireland clinical lead: Dr Michael Clarkson (Cork University Hospital)
- RITA-Ireland deputy clinical lead: Dr Ronan Leahy (Children’s Health Ireland)
- Coordinating unit: Tallaght University Hospital Lead clinician: Prof Patrick Mitchell
- Cork University Hospital, Department of Nephrology Lead clinicians: Dr Michael Clarkson, Dr Sarah Moran
- Children's Hospital Ireland, Department of Immunology Lead clinician: Dr Ronan Leahy
- St James Hospital, Department of Immunology Lead clinician: Dr. Niall Conlon
- St Vincent’s University Hospital, Department of Rheumatology Lead clinicians: Dr. Eamonn Molloy, Dr John Holian
- Children's Hospital Ireland, Department of Rheumatology Lead clinician: Dr Orla Killeen
- University Hospital Galway, Department of Nephrology Lead clinician: Prof Matthew Griffin
- RITA-Ireland coordinator: Stephanie McDonnell (Stephanie.mcdonnell@tuh.ie/ ern-rita@tuh.ie)
- RIA-Ireland Data Manager: Pamela O’Neil (pamela.oneill@tuh.ie)
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StrandsAutoimmune – adult vasculitis 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 specialities 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 Republic of Ireland developed a network of specialist units in collaboration with Vasculitis Ireland Awareness, the national vasculitis patient organisation. This 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. RITA-Ireland's clinical guidance is aligned where appropriate with that of the UK and Ireland Vasculitis Rare Disease Group (UKIVAS). Please visit https://ukivas.ndorms.ox.ac.uk/ for further information. - Primary Immunodeficiencies (PID)
- Autoinflammatory Disorders (AID)
- Autoimmune Diseases (AI)
- Adult autoimmune vasculitis
- Neuroinflammation
- Paediatric Rheumatology (PR)
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Contact- RITA-Ireland coordinator: Stephanie McDonnell (Stephanie.mcdonnell@tuh.ie/ ern-rita@tuh.ie)
- RIA-Ireland Data Manager: Pamela O’Neil (pamela.oneill@tuh.ie)
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NewsVasculitis updates UKIVAS Statement on Avacopan 1 May 2026 |
MDTThe Dublin Vasculitis and Autoimmune Group (DVAG) Multidisciplinary Meeting The DVAG MDM aims to provide joined up, efficient and excellent care to patients with complex medical issues within the field of autoimmune, auto inflammatory and immunodeficiency diseases, with a particular focus on systemic vasculitis, by developing a strong multi-disciplinary alliance within Tallaght University Hospital. The DVAG MDM was set-up initially in 2015 and approximately 250 cases have been discussed since then. It runs every month on a Friday morning and it is accessible to clinicians from any Irish hospital. However, we routinely receive input from experts in Tallaght University Hospital, St James’s Hospital and the Mater. This MDM involves a multi-systemic participation approach with input from many specialities including respiratory, nephrology, rheumatology, dermatology, immunology, histopathology, ENT, neurology and others, depending on the nature of the case. It is co-chaired by Professor Patrick Mitchell and Professor Mark Little on behalf of the group. This MDM supports diagnosis, provides advice regarding complex management and treatment decisions, as well as giving significant educational and learning value for attendees. The MDT outcomes are then recorded in the patient’s clinical notes. - Professor Patrick Mitchell: Respiratory (chairperson)
- Professor Mark Little: Nephrology (chairperson)
- Stephanie McDonnell: ERN-RITA Coordinator
- Professor Maureen Connolly: Dermatology
- Dr. Anne-Marie Tobin: Dermatology
- Professor Stephen Lane: Respiratory
- Dr. Sinead Murphy: Neurology
- Professor David Kane: Rheumatology
- Dr Colm Kirby: Rheumatology
- Mr. Brendan Fennessy: ENT
- Dr. Kevin O'Hare: Histopathology
- Dr. Niall Conlon: Immunology
- Caitriona Hackett: Dermatology
- John Paul Doran: Rheumatology
- Kevin Molloy: Dermatology
- Pamela O'Neill: Admin support
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ResearchResearch Projects and Biobanks By combining the academic strength of the members, the group also aims to maximise research funding credibility and to provide a mechanism for national and international research network engagement. The RITA-Ireland Vasculitis (RIV) Registry and biobank (RITA-Ireland Vasculitis RIV Registry and Biobank - Medicine | Trinity College Dublin) is an established infrastructure which feeds into the academic arm of the DVAG MDM. The RIV Registry and Biobank’s aim is to capture long-term longitudinal clinical data and high quality biological samples from patients with systemic vasculitis and allergic disorders, disease controls and healthy controls. Coordinated from Tallaght University Hospital, it currently receives data and samples from 10 centres across Ireland and has been actively recruiting since September 2012. In this relatively short period of time it has become one of the most important bio-resources in this field globally. The majority of recruits have the rare disease ANCA vasculitis. Irish registry database with the pan-UK UKIVAS initiative In 2022, the RKD Registry and Biobank was renamed the RITA-Ireland Vasculitis (RIV) Registry and Biobank after joining ERN-RITA. Research SectionsAlterations in circulating lymphoid cell populations (Fazekas et al, 2018) Anti-myeloperoxidase antibodies (Popat, et al 2017) Changes in urinary metabolomic profile (Al Ani et al, 2016) Clinical heterogeneity in Familial IgA Nephropathy (Fennelly et al, 2018) Prolonged Duration of Renal Recovery (Oomatia et al, 2016) The Irish Kidney Gene Project (Connaughton et al, 2015) https://www.tcd.ie/media/tcd/medicine/health-kidney-centre/pdfs/9.pdf |
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GuidesTo provide a foundation for developing the service in Ireland and to support translational Vasculitis research, the RITA-Ireland network established the RITA-Ireland Vasculitis Registry and Biobank, seeking to enrol all patients in Ireland with PSV, thereby providing a rich longitudinal clinical database 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 and with the UKIVAS registry, the largest PSV registry in the world. In addition, RITA-Ireland is linked to the European Vasculitis Society. Vasculitis guidelines AAV Guidelines |
