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