The Rare Kidney Disease & Vasculitis Registry & Biobank, Ireland
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|
|Email for biobank firstname.lastname@example.org|
|Principal Investigator||Prof. Mark Little|
||Poly - Collection aimed at supporting undetermined, multiple users with ethics approved research projects, through a defined access/application mechanism.|