Recruiting NCT06065852

National Registry of Rare Kidney Diseases

Trial Parameters

Condition Adenine Phosphoribosyltransferase Deficiency

Sponsor UK Kidney Association

Study Type OBSERVATIONAL

Phase N/A

Enrollment 35,000

Sex ALL

Min Age N/A

Max Age N/A

Start Date 2009-11-06

Completion 2039-12-31

All Conditions

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

Brief Summary

The goal of this National Registry is to is to collect information from patients with rare kidney diseases, so that it that can be used for research. The purpose of this research is to: * Develop Clinical Guidelines for specific rare kidney diseases. These are written recommendations on how to diagnose and treat a medical condition. * Audit treatments and outcomes. An audit makes checks to see if what should be done is being done and asks if it could be done better. * Further the development of future treatments. Participants will be invited to participate on clinical trials and other studies. The registry has the capacity to feedback relevant information to patients and in conjunction with Patient Knows Best (Home - Patients Know Best), allows patients to provide information themselves, including their own reported quality of life and outcome measures.

Eligibility Criteria

* Kidney Rare Disease * Paeds and adults * Eligibility differs for each rare disease group * See: https://ukkidney.org/rare-renal/recruitment

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NCT06065852

National Registry of Rare Kidney Diseases

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