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The Rare Kidney Disease Registry and Biobank

The RKD registry and Biobank was established in 2012 and aims to address an unmet need in the study of rare kidney disease in Ireland: facilitation of clinical studies when sporadic cases are scattered throughout many hospitals in Ireland. Existing centre-based research facilities serve this need poorly; networked collaboration across all the CRFs in the country is required as even large academic hospitals may only encounter a handful of cases. The majority of recruits have the rare disease ANCA vasculitis (with linking of the Irish registry database with the pan-UK UKIVAS initiative).

Rare Kidney Disease Biobank Protocols

RKD Kidney Disease and Biobank Protocol V8 (PDF 1.05 MB) Sample Processing Quick Card (PDF 235 kB) Protocol IIb BDP100 (PDF 107 kB) Appendix 1 Paxgene (PDF 628 kB) Appendix II P100 (PDF 2 MB) Appendix IV Specific Information Tallaght Research Labs v2 (PDF 789 kB)

Guide to using the RKD Registry hosted in REDCAP

Please find attached a summary for the content of each video (Doc 21Kb)

 

1. Introduction to data entry

2. Creating a new RKD ID

3. Initial data entry for new RKD recruits

4. Site review OR clinic entry

5. Complications


6. COVID-19

These videos were created by Dr Jennifer Scott

Data export from redcap database

EUVAS Data Dictionary

EUVAS Data Dictonary (xlsx 280 kB )

Vasculitis Acute Patients National Recruitment

Instructions for Clinicians (PDF 195 kB) .

Sample Processing Sheet

Sample Processing Sheet (PDF 137 kB)

Sample Processing Lab Handbook (PDF 638 kB)

BIOMNIS Ireland Booking Form -RKD (doc 23 kB)

Trinity Health Kidney Centre Ethics Documents

 

Data privacy notice and data management plan

Data Protection Impact Assessment Template Research (PDF 552 Kb)

RKD Registry and Biobank Data Management Plan v1 (PDF 923 Kb)

Supported Research Studies Summary (RKD Registry and Biobank)

Your Data Protection Rights (PDF 236 Kb)

 

Newsletters

 

Publications

We welcome expressions of interest from potential collaborators, please email us at rkdbiobank@tcd.ie.

Number of recruits to RKD Biobank since inception; many have multiple longitudinal samples at different stages of the disease

 

Biological samples (serum, proteomic grade plasma, urine, leucocytes, RNA and DNA) are processed and stored centrally in the Trinity Translational Medicine Institute in temperature monitored freezers, with archiving managed using industry standard Freezerworks software. All aliquots are bar coded and mapped to the freezer location. Linked clinical data are recorded by local clinician and research nurse on a web-accessed database on the REDCap platform developed and managed by Trinity Research IT. Every aliquot has a clearly documented provenance.

The facility is managed by Dr Alan Kennedy. For further information, or to inquire about potential projects or collaborations, please contact; rkdbiobank@tcd.ie or +353 1 896 4810

Postal Address

Rare Kidney Disease Registry and Biobank,
Trinity Health Kidney Centre, 
Office 2.13 / Lab 1.06, 
Trinity Translational Medicine Institute, 
St James’ Hospital,
Dublin 8, 
D08 W9RT, 
Ireland.