Irish National Rare Kidney Disease Registry
Trinity Health Kidney Centre, Tallaght Hospital.
2012
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.
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 Hospital
8. University Hospital Limerick.
Start: 1/7/12
Finish: Data collection ongoing.
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.
HSE, policy makers, ERN-RITA, clinical researchers, clinical teams.
Demographics, vasculitis-focused clinical variables, diagnostic criteria, immunosuppressive medication, complications of therapy, mortality, biopsy details, longitudinal data concerning disease activity and lab results collected at clinical visits.
Yes: https://www.tcd.ie/medicine/thkc/assets/EUVAS_data_dictionary_v1.xlsx
Data are pseudonymised so national identifiers are not used
Equity stratifiers:
1. County of residence
2. Ethnicity
3. Gender
4. Education.
Data are generally entered by the primary medical team with support from research nurses in some centres. It is strongly reliant upon NCHD support for data entry. There is no linkage to hospital IT systems. A contracted data manager surveys data quality on each site on a rotating basis.
Chapel Hill Consensus vasculitis classification criteria.
Orphacodes are used alongside diagnostic terms.
Approximately 60 records created on average annually.
Audited and summarised annually, published on website.
By submission of a data and sample access request form
http://www.tcd.ie/medicine/thkc/research/downloads-collaborators.php
No.