National Registry for Rare Kidney Diseases
National Registry of Rare Kidney Diseases (RaDaR)
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 |
|---|---|
| Enrollment | 35000 (estimated) |
| Sex | All |
| Sponsor | UK Kidney Association Academic / other |
| Locations | 1 site (Bristol, South West) |
| Trial ID | NCT06065852 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients with common kidney diseases or those not diagnosed with the specified rare kidney conditions may not benefit from this registry.
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 performed: Other registries for rare diseases have shown success in improving patient outcomes and advancing research, indicating that this approach is both valuable and tested.
Eligibility criteria
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 this trial is running
Bristol, South West
- Zoe Plummer — Bristol, South West, United Kingdom (Recruiting)
Study contacts
- Study coordinator: Zoe Plummer
- Email: zoe.plummer@ukkidney.org
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.