National Registry of Rare Kidney Diseases

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Primary Outcomes

Facilitate translational and epidemiological research

2009-2039

Setting up and maintaining a comprehensive clinical database in partnership with Rare Disease Groups.

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Multi-Source Intelligencefrom PubMed · FDA FAERS · WHO ICTRP

No linked publications found in PubMed

PubMed/NCBI (daily updates) FDA FAERS (quarterly updates) WHO ICTRP (weekly updates)

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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.

Adenine Phosphoribosyltransferase DeficiencyAH AmyloidosisAHL AmyloidosisAL AmyloidosisAlport SyndromeAtypical Hemolytic Uremic SyndromeAutoimmune Distal Renal Tubular AcidosisAutosomal Recessive Proximal Renal Tubular AcidosisAutosomal Recessive Distal Renal Tubular AcidosisAutosomal Dominant Polycystic Kidney DiseaseAutosomal Recessive Polycystic Kidney DiseaseBartter SyndromeBK NephropathyC3 Glomerulopathy With Monoclonal GammopathyC3 GlomerulopathyCalciphylaxisCrystalglobulinaemiaCrystal-storing HistiocytosisCystinosisCystinuriaDense Deposit DiseaseDent DiseaseDenys-Drash SyndromeDominant Hypophosphataemia With Nephrolithiasis and/or OsteoporosisDrug Induced Fanconi SyndromeDrug-Induced HypomagnesemiaDrug-Induced Nephrogenic Diabetes InsipidusEpilepsy, Ataxia, Sensorineural Deafness and TubulopathyFabry DiseaseFamilial Hypomagnesemia With Hypercalciuria and NephrocalcinosisFamilial Primary Hypomagnesemia With HypocalcuriaFamilial Primary Hypomagnesaemia With NormocalciuriaFamilial Renal GlucosuriaFanconi Renotubular Syndrome 1Fanconi Renotubular Syndrome 2Fanconi Renotubular Syndrome 3Fibrillary GlomerulonephritisFibromuscular DysplasiaFocal Segmental GlomerulosclerosisGeneralised Pseudohypoaldosteronism Type 1Gitelman SyndromeHeavy-Metal-Induced Fanconi SyndromeHepatocyte Nuclear Factor 1-Beta-Associated Monogenic DiabetesHereditary Renal HypouricemiaHereditary Hypophosphatemic Rickets With HypercalciuriaHyperuricaemic NephropathyIgA NephropathyImmunotactoid Glomerulonephritis With Organised Microtubular Mononoclonal Immunoglobulin DepositsInherited Renal Cancer SyndromesIntracapillary Monoclonal IgM Without CryoglobulinIntraglomerular/Capillary Lymphoma/LeukaemiaIsolated Autosomal Dominant Hypomagnesaemia Glaudemans TypeLiddle SyndromeLight Chain Cast NephropathyLight Chain Proximal Tubulopathy Without CrystalsLight Chain Proximal Tubulopathy With CrystalsLowe SyndromeMembranous NephropathyMembranoproliferative GlomerulonephritisMedullary Cystic Kidney DiseaseMinimal Change NephropathyMitochondrial Disease Of The KidneyMonoclonal Immunoglobulin Deposition DiseaseNail Patella SyndromeNephrogenic Diabetes InsipidusNephrogenic Syndrome of Inappropriate AntidiuresisNephronophthisisPrimary Hypomagnesemia With Secondary HypocalcemiaPrimary HyperoxaluriaProliferative Glomerulonephritis With Monoclonal IgG DepositsProximal Tubulopathy Without CrystalsPseudohypoaldosteronism Type 1, 2A-2EPure Red Cell AplasiaRetroperitoneal FibrosisSickle Cell NephropathyShiga Toxin Associated Haemolytic Uraemic SyndromeSteroid Resistant Nephrotic SyndromeSteroid-Sensitive Nephrotic SyndromeThin Basement Membrane NephropathyThrombotic Microangiopathy With Monoclonal GammopathyType 1 Cryoglobulinaemic GlomerulonephritisTuberous SclerosisUnclassified Monoclonal Gammopathy Of Renal SignificanceVasculitis

Primary Outcomes

Multi-Source Intelligencefrom PubMed · FDA FAERS · WHO ICTRP

Primary Outcomes

Multi-Source Intelligencefrom PubMed · FDA FAERS · WHO ICTRP

National Registry of Rare Kidney Diseases

Enrollment & Timeline

Eligibility

Trial Sites (1)