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Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
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.
Adenine phosphoribosyltransferase deficiency Immunoglobulin Light-chain Amyloidosis Nephritis, Hereditary Atypical Hemolytic Uremic Syndrome Renal tubular acidosis, distal, autosomal recessive Polycystic Kidney, Autosomal Dominant Polycystic Kidney, Autosomal Recessive Bartter Syndrome Calciphylaxis Cystinosis Cystinuria Glomerulonephritis, Membranoproliferative Dent Disease Denys-Drash Syndrome SeSAME syndrome Fabry Disease Hypomagnesemia primary Hypomagnesemia 1, Intestinal Glycosuria, Renal Fibromuscular Dysplasia Glomerulosclerosis, Focal Segmental Gitelman Syndrome Renal cysts and diabetes syndrome Hypophosphatemic Rickets with Hypercalciuria, Hereditary Glomerulonephritis, IGA Liddle Syndrome Oculocerebrorenal Syndrome Glomerulonephritis, Membranous Nephronophthisis, familial juvenile Nephrosis, Lipoid Nail-Patella Syndrome Diabetes Insipidus, Nephrogenic Nephrogenic Syndrome of Inappropriate Antidiuresis Hyperoxaluria, Primary Pseudohypoaldosteronism Red-Cell Aplasia, Pure Retroperitoneal Fibrosis Nephrotic Syndrome Hematuria, Benign Familial Tuberous Sclerosis Vasculitis
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. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
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:
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
zoe.plummer@ukkidney.org
The study is sponsored by UK Kidney Association
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
