National Registry for Rare Kidney Diseases
Official title: National Registry of Rare Kidney Diseases (RaDaR)
Run by UK Kidney Association · NCT06065852 · Data updated 2026-11-12
This study is collecting health information from people with rare kidney diseases to help improve treatments and create better care guidelines.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 35000 (estimated) |
| Sponsor | UK Kidney Association Academic / other |
| Locations | 1 site (Bristol, South West) |
| Status | Recruiting |
| Started | November 6, 2009 |
| Main results expected | December 31, 2039 |
| Study ends | December 31, 2039 |
| Registry record updated | October 4, 2023 |
| Trial ID | NCT06065852 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals of all ages diagnosed with specific rare kidney diseases such as Adenine Phosphoribosyltransferase Deficiency, AH Amyloidosis, AHL Amyloidosis, AL Amyloidosis, and Alport Syndrome.
✕Probably not a fit
Patients with common kidney diseases or those not diagnosed with the specified rare kidney conditions may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry aims to collect and analyze data from patients with rare kidney diseases to improve understanding and treatment of these conditions. It will develop clinical guidelines, audit current treatments and outcomes, and facilitate the development of future therapies. Patients will have the opportunity to participate in clinical trials and contribute their own health information, including quality of life measures, through a partnership with Patients Know Best. The registry addresses the challenges of studying rare diseases by aggregating patient data from multiple centers.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis, treatment guidelines, and outcomes for patients with rare kidney diseases.
How similar studies have gone: Other registries for rare diseases have shown success in improving patient outcomes and advancing research, indicating that this approach is both valuable and tested.
Who can join: the full rules
Show full inclusion / exclusion criteria
* Kidney Rare Disease * Paeds and adults * Eligibility differs for each rare disease group * See: https://ukkidney.org/rare-renal/recruitment
Where it's running
-
Zoe Plummer
Bristol, South West, United Kingdom Recruiting
Study contacts
- Study coordinator: Zoe Plummer
- Email: zoe.plummer@ukkidney.org
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Registry for patients with rare diseases
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NEPTUNE Match: Personalized matching of patients to kidney treatment options
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This study is testing whether a new kidney treatment called aliskiren works better than the standard treatment enalapril for people with C3 glomerulopathy.
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A network for analyzing kidney biopsy data in glomerular diseases
This study is trying to build a detailed database of kidney biopsy samples and health information from patients with glomerular diseases to help researchers better understand these conditions and improve treatments.
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Biobank for patients with rare kidney stone diseases
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.