Glomerular disease registry and biobank: design and baseline results

The diverse and rare causes of glomerular disease, coupled with the absence of Australian registries and biobanks, pose significant research and treatment challenges.

To establish a longitudinal glomerular disease data registry, a biorepository, and to enhance patient participation in clinical trials.

This prospective, observational study includes incident and prevalent patients with biopsy-proven glomerular disease. Patients are offered participation in collection of clinical and demographic data from medical records with optional consent for (i) collection of blood samples for biobanking, (ii) participation in future clinical trials, (iii) data linkage and (iv) 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 de-identified fashion for future analyses.

Recruitment commenced in December 2018 and ended in February 2025, with 230 patients enrolled and 114 bio samples collected. The median age of the participants was 49 years and 39% of participants were female. Immunoglobulin A nephropathy (38%) was the most common underlying disease followed by membranous nephropathy (17%). The median baseline estimated glomerular filtration (eGFR) was 64 mL/min/1.73m² (IQR: 37.5-90) with median urine albumin creatinine ratio of 188.05 mg/mmol (IQR: 54.45-398.83). Corticosteroids were the most common immunosuppressant (30.4%) used, followed by cyclophosphamide (8.7%) and rituximab (5.7%).

The establishment of this registry provides opportunities to monitor patients with glomerular disease, identify eligible participants for trials and facilitate future genetic testing.