Irish National Rare Kidney Disease Registry

Established initially with support from Science Foundation Ireland and linked to the RKD biobank. It is a core element of the HSE-designated Vasculitis Ireland Network centre of expertise, which became a full member of the RITA European Reference Network in later Jan 2022. A key requirement of this membership is maintenance of a relevant rare disease registry. The Vasculitis Ireland Awareness national patient organisation is intimately linked with the registry. **Purpose:** In scope: 1. Act as a contact registry for Irish patients with systemic vasculitis 2. To provide key outcome data (death, end-stage kidney disease, relapse, complications) of patients with primary systemic vasculitis 3. To link to discrete samples in the RKD biobank. Out of scope: 1. Private Hospitals. **Coverage:** National; the primary centres managing patients with ANCA vasculitis are included. The following sites collect data: 1. Tallaght University Hospital (lead site) 2. St James Hospital 3. St Vincents Hospital 4. Beaumont Hospital 5. Mater Hospital 6. University Hospital Galway 7. Cork University Ho