Collects information from people with rare kidney diseases for research
Gathers health records from people with rare kidney diseases to support future research.
Plain-language title generated from the registry record
Registry title: National Registry of Rare Kidney Diseases
Key facts
- Where
- Bristol, United KingdomSee the site
Where in United Kingdom
- Zoe PlummerBristol, United KingdomTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- UK Kidney Association
- Trial code
- NCT06065852
- Record updated
- 4 October 2023
- Original description
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.Read full original descriptionShow less
National Registry of Rare Kidney Diseases (RaDaR)
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.
Kidney Rare Disease; Paeds and adults; Eligibility differs for each rare disease group; See: https://ukkidney.org/rare-renal/recruitment.