Introduction:
Glomerular disease is an important cause of kidney disease but challenging to study due to varied, and often rare, aetiologies. There are no established registries or biobanks targeted to glomerular disease in Australia. The advent of genomics and new technologies has led to an increase in development of novel therapeutic agents over the last decade and there are increasingly more clinical trials available for patients with glomerular diseases. However, individual renal units see small numbers of patients with these conditions making it challenging to offer patients access to trials and therapeutics. We aimed to develop a longitudinal data registry of patients with glomerular disease, repository of biological sample storage and increase opportunities for patient participation in trials.
Methods:
This prospective, observational study includes incident and prevalent patients diagnosed and/or 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 a consumer engagement committee. Annual follow up is conducted through medical records, with no study specific visits. Blood samples for DNA-extraction and plasma are collected and stored in a de-identified fashion for future genomic and other analyses at baseline.
Results:
Recruitment commenced in December 2018 with a total of 188 patients enrolled and 77 biosamples collected until December 2023 with ongoing recruitment. The median age of the participants to date is 52.5 years (Interquartile range (IQR) 38.8-66.0)) and 39% of participants are female. Immunoglobulin A nephropathy (39%) is the most common underlying disease, followed by membranous nephropathy in 17% of participants. The median baseline estimated glomerular filtration (eGFR) was 69mL/min/1.73m2 (IQR 45-90) with median urine albumin:creatinine ratio of 56.05mg/mmol (IQR 17.6-215). At 6 month follow up, the mean eGFR decline was 1.8mL/min/1.73m2 /year (Standard Deviation 17.0). With regards to kidney protective therapies, 52% (n=98) of participants were receiving renin angiotensin aldosterone inhibition at baseline and this reduced to 21.3 % (n=40) at the 6 month follow up. Corticosteroids were the most common immunosuppressant used 27%of participants.
Conclusions:
The successful establishment of this registry provides opportunities to 1) monitor a cohort of patients with glomerular disease, 2) identify eligible participants for trials and 3) facilitate future genetic testing using the biobank.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.