National Registry of Rare Kidney Diseases

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.

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

Sponsors & Collaborators

• UK Kidney Association

  lead OTHER

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2009-11-06

Primary Completion

2039-12-31

Completion

2039-12-31

Countries

• United Kingdom

Study Locations