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.

Trial Details

NCT Number	NCT06065852
Lead Sponsor	UK Kidney Association
Conditions (from sponsor)	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 +76 more
Related terms	Adenine phosphoribosyltransferase deficiency, Atypical Hemolytic Uremic Syndrome, Bartter Syndrome, Calciphylaxis, Cystinosis, Cystinuria, Dent Disease, Denys-Drash Syndrome, Diabetes Insipidus, Nephrogenic, Fabry Disease, Fibromuscular Dysplasia, Gitelman Syndrome, Glomerulonephritis, IGA, Glomerulonephritis, Membranoproliferative, Glomerulonephritis, Membranous, Glomerulosclerosis, Focal Segmental, Glycosuria, Renal, Hematuria, Benign Familial, Hyperoxaluria, Primary, Hypomagnesemia 1, Intestinal, Hypomagnesemia primary, Hypophosphatemic Rickets with Hypercalciuria, Hereditary, Immunoglobulin Light-chain Amyloidosis, Liddle Syndrome, Nail-Patella Syndrome, Nephritis, Hereditary, Nephrogenic Syndrome of Inappropriate Antidiuresis, Nephronophthisis, familial juvenile, Nephrosis, Lipoid, Nephrotic Syndrome, Oculocerebrorenal Syndrome, Polycystic Kidney, Autosomal Dominant, Polycystic Kidney, Autosomal Recessive, Pseudohypoaldosteronism, Red-Cell Aplasia, Pure, Renal cysts and diabetes syndrome, Renal tubular acidosis, distal, autosomal recessive, Retroperitoneal Fibrosis, SeSAME syndrome, Tuberous Sclerosis, Vasculitis
Enrollment	35,000 participants
Start Date	Nov 6, 2009
Primary Completion	Dec 31, 2039 (estimated)
Study Completion	Dec 31, 2039 (estimated)
Updated on ClinicalTrials.gov	Oct 4, 2023