RecruitingOBSERVATIONAL

National Registry of Rare Kidney Diseases

The 'National Registry of Rare Kidney Diseases' is a UK-wide project gathering details from patients with unusual kidney conditions. Its main goals are to develop clear guidelines for diagnosing and treating these diseases, check how well current treatments are working, and pave the way for new medicines in the future. By collecting this important information, scientists and doctors can learn more about how these rare diseases affect people over time. Participants may also be invited to join other studies. This registry also uses a special system called Patients Know Best, allowing you to add your own health information and feedback on your quality of life.

At a glance

Status

Recruiting

Sponsor

UK Kidney Association

Enrolment target

35,000

Start

06 Nov 2009

Estimated completion

31 Dec 2039

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

What is this study about?

This project, called the National Registry of Rare Kidney Diseases (RaDaR), is creating a UK-wide database of people with rare kidney conditions. Think of it like a central library of information about these specific health problems. Because rare diseases don't affect many people, individual doctors might only see a small number of cases over many years, which makes it hard for them to get a complete picture of the condition.

The main idea behind RaDaR is to bring all this precious information together. By looking at a larger group of patients, researchers and doctors can better understand how these diseases develop, how they impact people, and what the best ways to treat them are. This shared knowledge helps create better care guidelines, which are like instructions for doctors on how to diagnose and manage these conditions effectively. It also helps check if current treatments are working well and points towards areas where new treatments are needed.

Ultimately, collecting this information helps in a few key ways: it improves our understanding of rare kidney diseases, it guides doctors in providing the best possible care, and it helps scientists develop new and better medicines for the future. You could even be invited to take part in other research studies based on the information in the registry. The registry also allows you to share your own health information and how you feel, using a secure online system.

Key takeaways

Helps understand rare kidney diseases better.
Aims to create better treatment guidelines.
Could help develop new medicines for the future.
Involves sharing existing health information.
You can also share your own health updates online.
You can withdraw at any time.

Who may be eligible?

This registry is looking for people of all ages, from children to adults, who have been diagnosed with a rare kidney disease. There are many different rare kidney conditions they are interested in, and the specific requirements might vary slightly depending on your exact condition.

For example, some of the conditions include things like Alport Syndrome, Polycystic Kidney Disease (both adult and childhood types), Fabry Disease, and many others that affect the kidneys in unusual ways. If you're not sure if your condition is on their list, you can check their website or speak to your doctor.

Essentially, if you have a kidney problem that your doctor considers rare, you might be able to be part of this registry. Both boys and girls, men and women, are welcome to participate.

Quick self-check

Do I have a rare kidney disease diagnosis?
Am I a resident in the UK?
Am I willing to share my medical information for research?
Am I comfortable being contacted about other studies (optional)?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to join this registry, it mainly involves sharing your medical information related to your rare kidney disease. This information would already be part of your medical records. You might also be invited to take part in other related research studies or clinical trials, but you would always have the choice to say yes or no to these.

The registry also offers a feature where you can see your own health information and contribute details about your quality of life and how you're feeling. This is done through a secure online platform called 'Patients Know Best'. There are no specific visits, assessments, or medications directly involved with joining the registry itself. The total duration of your participation is ongoing, as the registry aims to collect information over time to better understand these conditions.

Potential risks and benefits

By joining this registry, your information could significantly help improve understanding and care for rare kidney diseases, potentially leading to better treatments for yourself and others in the future. The main 'risk' is the sharing of your anonymised health information for research purposes, which is handled very carefully to protect your privacy. You have the right to withdraw your information from the registry at any time, without it affecting your medical care.

Locations (1)

Zoe Plummer
Bristol, United Kingdom· Recruiting

Common questions

What is a 'rare kidney disease'?

A rare kidney disease is a condition that affects the kidneys but is not commonly seen, making it harder for doctors and researchers to study compared to more common diseases.

Will my personal details be kept private?

Yes, all your personal information will be handled with strict confidentiality. The registry aims to protect your privacy and often uses anonymised data for research.

Do I have to do anything special if I join?

No, joining the registry itself doesn't involve any extra appointments or treatments. It generally means sharing existing medical information for research. You can also choose to share your own health updates online.

Can I leave the registry if I change my mind?

Yes, you are free to withdraw your consent and have your information removed from the registry at any time, without it affecting your medical care.

Will joining this registry help me personally?

While it may not directly change your treatment, by contributing, you help improve overall understanding, leading to better care and potential new treatments for rarer kidney conditions in the future.

How to find out more

Zoe Plummer

zoe.plummer@ukkidney.org Official trial record

Always speak to your GP or specialist before deciding to take part in a study.