Health TrialsbyHealthPanel

National Registry of Rare Kidney Diseases

ConditionsAdenine 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
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUK Kidney Association

About this trial

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

This trial does not accept healthy volunteers

Qualifiers

Kidney Rare Disease

Paeds and adults

Eligibility differs for each rare disease group

See: https://ukkidney.org/rare-renal/recruitment

Disqualifiers

None

Trial population

Varies for each Rare Disease Group

Trial design

Design model

Cohort

Time perspective

Other

Treatments tested in this trial

Not listed

Trial groups

35,000 Participants
are grouped into 31 trial groups

31

Trial groups

See each trial group below.

Group A: Alport Syndrome Rare Disease Group
Group B: APRT Deficiency Rare Disease Group
Group C: ARPKD & NPHP Rare Disease Group
Group D: Atypical Haemolytic Uraemic Syndrome Rare Disease Group
Group E: Autosomal Dominant Polycystic Kidney Disease Rare Disease Group
Group F: Autosomal Dominant Tubulointerstitial Kidney Disease Rare Disease Group
Group G: BK Nephropathy Rare Disease Group
Group H: Calciphylaxis rare Disease Group
Group I: CKD due to Genetic Factors in people of African ancestry Rare Disease Group
Group J: Cystinosis Rare Disease Group
Group K: Cystinuria Rare Disease Group
Group L: Dent Disease & Lowe Syndrome Rare Disease Group
Group M: Fabry Disease Rare Disease Group
Group N: Fibromuscular Dysplasia Rare Disease Group
Group O: Haemolytic Uraemic Syndrome Rare Disease Group
Group P: Hepatic Nuclear Factor 1B Mutation Rare Disease Group
Group Q: Hyperoxaluria Rare Disease Group
Group R: IgA Nephropathy Rare Disease Group
Group S: Inherited Renal Cancer Syndromes Rare Disease Group
Group T: Lupus Nephritis Rare Disease Group
Group U: Membranous Nephropathy Rare Disease Group
Group V: Mitochondrial disease affecting the kidney Rare Disease Group
Group W: Monoclonal Gammopathy of Renal Significance Rare Disease Group
Group X: MPGN, DDD & C3 Glomerulopathy Rare Disease Group
Group Y: Nephrotic Syndrome Rare Disease Group
Group Z: Pregnancy and Chronic Kidney Disease Rare Disease Group
Group [: Pure Red Cell Aplasia Rare Disease Group
Group \: Retroperitoneal Fibrosis Rare Disease Group
Group ]: Tuberous Sclerosis Rare Disease Group
Group ^: Tubulopathy Rare Disease Group
Group _: Vasculitis Rare Disease Group

Trial outcomes

Primary outcomes

1

Facilitate translational and epidemiological research

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

Time frame
2009-2039

Secondary outcomes

Other outcomes

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

UK Kidney Association

Lead sponsor

Source ClinicalTrials.gov
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