National Unified Renal Translational Enterprise – Rare Kidney Disease Bioresource
Children and young people with rare kidney diseases. Glomerulonephritis (GN): Including subtypes such as IgA Vasculitis Nephritis (IgAVN), IgA Nephropathy (IgAN), Idiopathic Nephrotic Syndrome (iNS), C3 Glomerulopathy/Membranoproliferative GN (MPGN), Post-infectious Glomerulonephritis (PIGN), Lupus Nephritis (LN), ANCA-associated vasculitis (AAV), and Membranous Nephropathy (MN)
The study will be conducted as a prospective, cohort study across 13 UK sites. Participants will be recruited from two initial subgroups: children with rare kidney diseases (specifically glomerulonephritis) and a healthy paediatric control group. Clinical staff will identify and approach eligible patients during routine clinical investigations, and informed consent or assent will be obtained before any study-specific procedures commence. 1. Healthy Control Group Children in this group will be recruited while they are already attending hospital for other minor, non-inflammatory procedures (for example, grommet insertion, ear surgery, or birthmark removal), or during investigations for non-chronic conditions such as delayed growth or puberty. These participants will take part once only. At that visit: They will receive an information sheet and consent form and be given time to ask questions before deciding to take part. Eligibility will be checked, including a simple urine dipstick test. Once consented, blood and urine samples will be collected. A minimal core metadata set will be pseudonymised at the site level and recorded in a secure REDCap database. Observations: No clinical follow-up will be conducted for these participants beyond the initial collection. Subgroup 2 - Glomerulonephritis Recruitment: Children in this group will be identified during their usual hospital care when they are having tests related to their kidney condition. They will take part in four visits: Baseline (first visit): screening and consent, followed by collection of blood, urine, and kidney biopsy samples (if taken for clinical care). If plasma or lipid apheresis is being done for medical reasons, the leftover material will also be collected. 1 month (±2 weeks): blood and urine samples, plus updated clinical information. 6 months (±4 weeks): blood and urine samples, plus clinical information. 12 months (±4 weeks): blood and urine samples, biopsy if taken for clinical reasons, and upd
Glomerulonephritis subgroup: 1. Children and young people aged 0-16 years 2. A diagnosis of glomerular disease falling into specific subtypes: Idiopathic nephrotic syndrome (INS), IgA related glomerulonephritis (IgAN and IgAVN), Primary membranous nephropathy (MN), Lupus nephritis (LN), ANCA associated vasculitis, Anti-glomerular basement membrane (GBM) GN, Immunoglobulin and complement mediated GN with MPGN pattern, or Post infectious GN (PIGN) 3. Participants must have had a diagnostic kidney biopsy around the baseline visit time (+/- 2 weeks) 4. The participant (or parent/legal guardian if <16 years) must be willing and able to provide informed consent. 5. Participants must be existing or willing participants in the RaDaR (The National Registry of Rare Kidney Diseases) Healthy controls subgroup: 1. Children and young people aged 0-16 years attending a participating site for clinical review or investigations for other purposes. 2. Participants will have no relevant medical history of inflammatory, kidney disease, or other long-term health conditions that clinicians feel may impact the integrity of scientific discovery. 3. Willing to consent or for a child (if aged <16 years) has a parent/legal guardian who can provide consent on their behalf.
Glomerulonephritis subgroup: 1. Children and young people with a known acute or chronic medical illness that may contribute to biological changes that could impact the study findings, this may include acute infections. 2. Children aged <16 years who are not having blood tests or kidney biopsy performed for clinical purposes. This study will not expose children to an additional needle for research purposes only. Healthy controls subgroup: 1. Children and young people with a known acute or chronic medical illness that may contribute to biological changes that could impact the study findings, this may include inflammatory diseases, acute infections or known kidney disease. 2. Abnormal urine dipstick test suggestive of a urinary tract infection or underlying kidney disease. 3. Children aged <16 years who are not having blood tests done for other purposes. This study will not expose children to an additional needle to take blood tests for research purposes only.