Glomerular disease registry and biobank: design and baseline results

Background: The diverse and rare causes of glomerular disease, coupled with the absence of Australian registries and biobanks, pose significant research and treatment challenges. Aims: To establish a longitudinal glomerular disease data registry, a biorepository, and to enhance patient participation in clinical trials. Methods: This prospective, observational study includes incident and prevalent patients with biopsy-proven glomerular disease. Patients are offered participation in the 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 a de-identified fashion for future analyses. Results: Recruitment commenced in December 2018, with 188 patients enrolled and 77 biosamples collected as of December 2023. The median age of the participants was 52.5 years, and 39% of participants were female. Immunoglobulin A nephropathy (39%) was the most common underlying disease. The median baseline estimated glomerular filtration (eGFR) was 69 mL/min/1.73 m² (IQR: 45–90) with a median urine albumin creatinine ratio of 56.1 mg/mmol (IQR: 17.6–215). At the 6-month follow-up of 188 patients, the mean eGFR decline was 1.8 mL/min/1.73 m²/year (SD: 17.0). There were 52% (n = 98) of participants 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 (27%) used. Conclusion: The establishment of this registry provides opportunities to monitor patients with glomerular disease, identify eligible participants for trials and facilitate future genetic testing.