2026 portfolio project by Johnny Rice . Live ChEMBL, UniProt, AACT SQL, and scientific informatics demos. Portfolio by Johnny Rice Informatics demo Fetching protocol from ClinicalTrials.gov… National Registry of Rare Kidney Diseases | ClariTrial
NCT06065852RECRUITING N/A
National Registry of Rare Kidney Diseases 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 Deficiency AH Amyloidosis AHL Amyloidosis AL Amyloidosis Alport Syndrome
Facilitate translational and epidemiological research
2009-2039
Setting up and maintaining a comprehensive clinical database in partnership with Rare Disease Groups.
* Kidney Rare Disease
* Paeds and adults
* Eligibility differs for each rare disease group
* See: https://ukkidney.org/rare-renal/recruitment
Multi-Source Intelligencefrom PubMed · FDA FAERS · WHO ICTRP 0 0 No linked publications found in PubMed
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
Zoe Plummer
Bristol, South West, United Kingdom