IgA Nephropathy: Your Kidney Biopsy and Urine Tests as Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

IgA nephropathy, also called Berger's disease, is often found by chance: blood in the urine, protein on a routine test, or high blood pressure in a young adult. Its course varies widely, and for years there was little to offer besides blood pressure tablets. New medicines are now changing that, and research needs to know how people do on them over years. Your kidney biopsy, your protein and eGFR results over time, and your own account are that evidence, and because the disease is rare, each record counts for more.

How many people live with it

A study across ten European countries estimated an annual incidence of 0.76 per 100,000 and a point prevalence of 2.53 per 10,000, under the threshold for a rare disease.

The records worth keeping

The KDIGO 2025 guideline on IgA nephropathy describes the tests that leave records:

• A kidney biopsy, which is recommended when protein in the urine is over 0.5 g a day or kidney function is falling. It is the only way to confirm the diagnosis.
• The MEST-C score on the biopsy, a prognostic scoring system that describes what the biopsy showed.
• Urine protein tests over time: treatment now aims for complete remission of proteinuria.

Your eGFR and protein results over the years, and your prescription history, show how the disease and treatment went. If you do not have them, ask your kidney clinic for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. Because IgA nephropathy is rare, a complete story with the records the guideline lists comes to about $198 per licence on the benchmark today. Why rare disease data is worth more. Every line and its source is on the IgA nephropathy page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

People with IgA nephropathy are also paid for their time directly: a published listing offered $150 for a 90-minute phone interview.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add your biopsy report, blood and urine results and clinic letters as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.