National Registry of Rare Kidney Diseases

Study facts

Conditions recorded

Adenine Phosphoribosyltransferase Deficiency; AH Amyloidosis; AHL Amyloidosis; AL Amyloidosis; Alport Syndrome; Atypical Hemolytic Uremic Syndrome; Autoimmune Distal Renal Tubular Acidosis; Autosomal Recessive Proximal Renal Tubular Acidosis; Autosomal Recessive Distal Renal Tubular Acidosis; Autosomal Dominant Polycystic Kidney Disease; Autosomal Recessive Polycystic Kidney Disease; Bartter Syndrome; BK Nephropathy; C3 Glomerulopathy With Monoclonal Gammopathy; C3 Glomerulopathy; Calciphylaxis; Crystalglobulinaemia; Crystal-storing Histiocytosis; Cystinosis; Cystinuria; Dense Deposit Disease; Dent Disease; Denys-Drash Syndrome; Dominant Hypophosphataemia With Nephrolithiasis and/or Osteoporosis; Drug Induced Fanconi Syndrome; Drug-Induced Hypomagnesemia; Drug-Induced Nephrogenic Diabetes Insipidus; Epilepsy, Ataxia, Sensorineural Deafness and Tubulopathy; Fabry Disease; Familial Hypomagnesemia With Hypercalciuria and Nephrocalcinosis; Familial Primary Hypomagnesemia With Hypocalcuria; Familial Primary Hypomagnesaemia With Normocalciuria; Familial Renal Glucosuria; Fanconi Renotubular Syndrome 1; Fanconi Renotubular Syndrome 2; Fanconi Renotubular Syndrome 3; Fibrillary Glomerulonephritis; Fibromuscular Dysplasia; Focal Segmental Glomerulosclerosis; Generalised Pseudohypoaldosteronism Type 1; Gitelman Syndrome; Heavy-Metal-Induced Fanconi Syndrome; Hepatocyte Nuclear Factor 1-Beta-Associated Monogenic Diabetes; Hereditary Renal Hypouricemia; Hereditary Hypophosphatemic Rickets With Hypercalciuria; Hyperuricaemic Nephropathy; IgA Nephropathy; Immunotactoid Glomerulonephritis With Organised Microtubular Mononoclonal Immunoglobulin Deposits; Inherited Renal Cancer Syndromes; Intracapillary Monoclonal IgM Without Cryoglobulin; Intraglomerular/Capillary Lymphoma/Leukaemia; Isolated Autosomal Dominant Hypomagnesaemia Glaudemans Type; Liddle Syndrome; Light Chain Cast Nephropathy; Light Chain Proximal Tubulopathy Without Crystals; Light Chain Proximal Tubulopathy With Crystals; Lowe Syndrome; Membranous Nephropathy; Membranoproliferative Glomerulonephritis; Medullary Cystic Kidney Disease; Minimal Change Nephropathy; Mitochondrial Disease Of The Kidney; Monoclonal Immunoglobulin Deposition Disease; Nail Patella Syndrome; Nephrogenic Diabetes Insipidus; Nephrogenic Syndrome of Inappropriate Antidiuresis; Nephronophthisis; Primary Hypomagnesemia With Secondary Hypocalcemia; Primary Hyperoxaluria; Proliferative Glomerulonephritis With Monoclonal IgG Deposits; Proximal Tubulopathy Without Crystals; Pseudohypoaldosteronism Type 1, 2A-2E; Pure Red Cell Aplasia; Retroperitoneal Fibrosis; Sickle Cell Nephropathy; Shiga Toxin Associated Haemolytic Uraemic Syndrome; Steroid Resistant Nephrotic Syndrome; Steroid-Sensitive Nephrotic Syndrome; Thin Basement Membrane Nephropathy; Thrombotic Microangiopathy With Monoclonal Gammopathy; Type 1 Cryoglobulinaemic Glomerulonephritis; Tuberous Sclerosis; Unclassified Monoclonal Gammopathy Of Renal Significance; Vasculitis

Lead sponsor

UK Kidney Association

Study type

Observational

Overall status

Recruiting · this can differ by location

Age range in the record

Not specified to Not specified

Sex eligibility field

All

Healthy volunteers accepted

No, according to the record

Phase

Not applicable or not reported

Study record last updated

4 October 2023

Study team last verified status

2023-09

These fields are a starting point. Eligibility can include diagnosis, treatment history and other criteria shown only in the complete source record. A registry entry does not establish treatment effectiveness.

Questions for the research team

• Is this exact location currently enrolling participants, and do my circumstances meet the full criteria?
• What visits, tests, possible risks and follow-up would participation involve?
• Are travel costs or accessibility arrangements available?
• How would participation affect my usual care, and what happens if I withdraw?