S KOTWAL1,2, Y MEHTA1, V LEE3, A MALLAWARCHCHI4,5, A RITCHIE6, M WONG1,7, A MAKRIS8, S BADVE1,9, K YONG2, M JARDINE1,6, V PERKOVIC10, B BOSE1,11
1The George Institute For Global Health, Sydney, Australia, 2Prince of Wales Hospital, Sydney, Australia, 3Westmead Hospital, Westmead, Australia, 4Royal Prince Alfred Hospital, Sydney, Australia, 5Garvan Institute of Medical Research, Sydney, Australia, 6Concord Repatriation General Hospital, Sydney, Australia, 7Royal North Shore Hospital, Sydney, Australia, 8Liverpool Hospital, Sydney, Australia, 9St George Hospital, Sydney, Australia, 10UNSW, Sydney, Australia, 11Nepean Hospital, Kingswood, Australia
Aim: We aim to develop a longitudinal data registry of patients with glomerular disease, repository of biological sample storage and increase opportunities for patient participation in trials.
Background: Glomerular disease is an important cause of kidney disease but challenging to study given numerous, often rare, aetiologies. There are no established registries or biobanks targeted to glomerular disease in Australia. The advent of genomics and new technologies has driven development of novel therapeutic agents and innovative trial designs to rapidly test agents. Individual renal units see small numbers of patients with these conditions making it difficult to offer patients access to such trials.
Methods: This prospective, observational study includes incident and prevalent patients diagnosed/being treated with biopsy proven glomerular disease at participating units. Patients are offered participation in collection of clinical and demographic data from medical records with optional consent for 1) blood sample collection for biobanking 2) willingness to participate in future clinical trials, 3) data linkage and 4) participation in the consumer engagement committee. Annual follow up is conducted through medical records, with no further study specific visits. Blood samples for DNA-extraction and plasma are collected and stored at the NSW Health Statewide Biobank in a de-identified fashion for future genomic and other analyses.
Result: Seven Sydney sites have collaborated together in the vanguard phase of the project. We have enrolled 28 patients into the registry since recruitment commenced in March 2020. The project will recruit for at least 5 years with plans to expand nationally.
Conclusions: A repository of clinical, demographic and biological samples is crucial to developing personalised medicine approaches for patients with glomerular disease and we invite national interest.
Dr Kotwal is a nephrologist at Prince of Wales Hospital in Sydney and a post-doctoral research fellow at the George Institute of Global Health. Dr Kotwal has expertise in epidemiology, biostatistics, the analysis of linked health data and evidence implementation research.