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National Registry of Rare Kidney Diseases

Join our rare kidney disease registry to help advance research!

Recruiting
All
Phase N/A

This study is about collecting information from people with rare kidney diseases to help doctors and researchers learn more about these illnesses. Rare kidney diseases are health problems that affect the kidneys and are not very common. This project will help doctors make better plans for treating these diseases and check if current treatments are working well. It might also help in creating new treatments.

Participants can be children or adults with rare kidney diseases. People from the UK are mainly invited, but others can join if approved by a UK hospital. Participants' personal experiences and health details will be included in a special database, which can help in future studies, and they may be invited to join other clinical trials.

  • The study mainly involves people in the UK, but international participants can join with approval.
  • Your personal health information will be collected and used for research and developing new treatments.
  • Participation might include future invitations to clinical trials.

For more details on eligibility, visit: UK Kidney Recruitment.

Study details
    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

NCT06065852

UK Kidney Association

17 April 2026

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FAQs

Learn more about clinical trials

What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

How long does a clinical trial take place?

The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

Do I get compensated for taking part in clinical trials?

Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

How safe are clinical trials?

Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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