Ask to take part

Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Zoe Plummer zoe.plummer@ukkidney.org


Study Location:

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Be Part of Research - Trial Details - National Registry of Rare Kidney Diseases

National Registry of Rare Kidney Diseases

Recruiting

Open to: ALL

Age: All

Medical Conditions

Kidney Neoplasms
Tuberous Sclerosis
Immunoglobulin Light-chain Amyloidosis
Denys-Drash Syndrome
Osteoporosis
Arthrogryposis
Rickets
Rickets, Hypophosphatemic
Familial Hypophosphatemic Rickets
Nail-Patella Syndrome
Deafness
Hearing Loss, Sensorineural
Fabry Disease
Oculocerebrorenal Syndrome
Inappropriate ADH Syndrome
Kidney Diseases
Nephrotic Syndrome
Nephrosis
Polycystic Kidney Diseases
Glomerulonephritis, IGA
Glomerulonephritis
Polycystic Kidney, Autosomal Dominant
Glomerulonephritis, Membranous
Nephrolithiasis
Glomerulosclerosis, Focal Segmental
Azotemia
Hemolytic-Uremic Syndrome
Hyperoxaluria, Primary
Atypical Hemolytic Uremic Syndrome
Nephritis, Hereditary
Diabetes Insipidus
Glomerulonephritis, Membranoproliferative
Cystinuria
Nephrocalcinosis
Dent Disease
Diabetes Insipidus, Nephrogenic
Acidosis, Renal Tubular
Polycystic Kidney, Autosomal Recessive
Gitelman Syndrome
Pseudohypoaldosteronism
Fanconi Syndrome
Bartter Syndrome
Kidney Diseases, Cystic
Renal Tubular Transport, Inborn Errors
Nephrosis, Lipoid
Liddle Syndrome
Glycosuria, Renal
Vasculitis
Fibromuscular Dysplasia
Histiocytosis
Paraproteinemias
Monoclonal Gammopathy of Undetermined Significance
Thrombotic Microangiopathies
Red-Cell Aplasia, Pure
Fanconi Anemia
Cystinosis
Diabetes Mellitus
Amyloidosis
Acidosis
Mitochondrial Diseases
Hypocalcemia
Hypophosphatemia
Calciphylaxis
Syndrome
Hypercalciuria
Retroperitoneal Fibrosis


This information is provided directly by researchers and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information.


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.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

Nov 2009 Dec 2039

OBSERVATIONAL



You can take part if:



You may not be able to take part if:


This is in the inclusion criteria above


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • Zoe Plummer
    Bristol
    South West
    BS34 7RR


The study is sponsored by UK Kidney Association




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Read full details for Trial ID: NCT06065852
Last updated 26 September 2023

This page is to help you find out about a research study and if you may be able to take part

You can print or share the study information with your GP/healthcare provider or contact the research team directly.