We'd like your feedback
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.
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:
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.
