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) Urological and Genital Diseases
Conditions
Interventions
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 glomeruloneph
Sponsors
University of Liverpool
Eligibility
Sex/Gender
All
Age
0 Years to 16 Years
Inclusion criteria
Inclusion criteria: 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.
Exclusion criteria
Exclusion criteria: 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.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Biological phenotyping and characterisation of rare kidney diseases through the establishment of a national bioresource. This will be achieved by collecting and analysing longitudinal biosamples (including multi-omics data) linked to deep phenotypical clinical data from the National Registry of Rare Kidney Diseases (RaDaR). | — |
Countries
England, Northern Ireland, Scotland, United Kingdom, Wales
Contacts
Public ContactSerena McGuinness
Outcome results
None listed