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The Rare Kidney Disease Registry and Biobank (RKD)
Hosting Legal Entity
Trinity College Dublin
Saint James Street, Trinity Translational Medicine Institute,, Dublin, PO: D08 W9RT (Ireland)
Type Of RI
Coordinating Country
Current Status:
Operational since 2012
Scientific Description
This is a pan-Ireland endeavour aimed at recruiting patients with rare kidney disease (prevalence <5/10,000). Although the main focus is on systemic vasculitis, it also includes other rare diseases, including families with undiagnosed genetic kidney disease. Rich, longitudinal clinical data are recorded in an ethically robust online database. Linked clinical samples are processed according to tight standard operating procedures and stored in a registered biobank facility. Every sample has a clearly documented provenance, including number of freeze-thaws and needle to freezer time. Samples include serum, plasma (with and without protease inhibitor), urine (with and without protease inhibitor), Paxgene tubes, PBMC’s and DNA. It is linked to the UKIVAS registry ( and the European Vasculitis Society (EUVAS, It is funded by Science Foundation Ireland and the Dublin Centre for Clinical Research. Access is open to academic and industry collaborators.

RI Keywords
Kidney, Biobanks, Vasculitis, Genetics, Rare, ANCA, Renal, Autoimmune, Registry
RI Category
Genomic, Transcriptomic, Proteomics and Metabolomics Facilities
Registers and Survey-led Studies/Databases
Clinical Research Centres
Collections of Biological Resources (e.g. Microorganisms, Biobanks and Seed Banks)
Data Archives, Data Repositories and Collections
Translational Research Centres
Research Data Service Facilities
Scientific Domain
Biological and Medical Sciences
Provision of samples and linked clinical data to collaborators

Provision of archived patient and control biological samples and linked clinical data to collaborators. Biological samples (serum, proteomic grade plasma, urine, leucocytes, RNA and DNA) are processed and stored centrally at the TCD Biobank with archiving managed using Freezerworks software. All aliquots are bar coded and mapped to the freezer location. Every aliquot has a clearly documented provenance. A large linked clinical dataset is recorded by local clinician and research nurse on a web-accessed database. Audits of all data bases are carried out on a regular basis to ensure completeness and quality of the data.

Provision of access to rich, longitudinal clinical registry data on patients with systemic vasculitis

Each recruit is linked to a detailed database of demographic data, clinical descriptors and medication information. Most have multiple (up to 50) encounters over time, capturing clinical data from the time of diagnosis, through induction of remission and episodes of relapse. Collaborators will have access to these anonymised data, which will prove invaluable in identifying well defined cohorts for clinical therapeutic and biomarker trials.

Freezerworks Sample Tracking, management and Inventory System

Freezerworks Sample Tracking, management and Inventory system software that is both configurable and secure.The Freezerworks product line offers a complete solution, meeting GLP and FDA guidelines, including 21 CFR part 11 requirements, for individual labs in universities, clinics, biotech, and pharmaceutical companies.

Distiller Clinical Database Software

A large linked clinical dataset is recorded by local clinician and research nurse on a web-accessed database Distiller developed by the Dublin Centre for Clinical Research. Audits are carried out regularly to ensure completeness and quality of the data.

Automated DNA extraction System

high-throughput DNA extraction (Autopure Instrumentation, Qiagen) to a high degree of purification and quality from a wide variety of sources including blood, tissue, urine, and saliva. We house ancillary equipment for sample handling, quantitation and qualitative characterisation of nucleic acids.

Temperature monitored -80 and liquid nitrogen storage

All cryofacilities use industry standard temperature monitoring. All samples can be linked to a temperature report.

Date of last update: 05/06/2019
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