The Rare Kidney Disease & Vasculitis Registry & Biobank, Ireland

Registration Status: Pending

Objective: 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 (www.ukivas.org) and the European Vasculitis Society (EUVAS, www.vasculitis.org). It is funded by Science Foundation Ireland and the Dublin Centre for Clinical Research. Access is open to academic and industry collaborators.

Registered Biobank Name The Rare Kidney Disease & Vasculitis Registry & Biobank
Biobank Leader Valerie Logan
Country Ireland
Email for biobank inquiries rkdbiobank@tcd.ie
Principal Investigator Prof. Mark Little
User Type
  • Mono: A biobank that supports a specific research project, may have few staff members, a small-scale accrual scope with little to no initial intention of releasing or distributing biospecimens to secondary parties
  • Oligo: A biobank that supports several research groups or clinical trials, may or may not be designed to release biospecimens outside their collaborative group
  • Poly: A biobank that has generally a larger accrual scope, resources, and multiple users outside the biobank proper
Poly - Collection aimed at supporting undetermined, multiple users with ethics approved research projects, through a defined access/application mechanism.
Biospecimen Collected: