National Registry of Rare Kidney Diseases (2024 renewal)
Research type
Research Database
IRAS ID
349779
Contact name
Zoe Plummer
Contact email
Research summary
National Registry of Rare Kidney Diseases
REC name
South West - Central Bristol Research Ethics Committee
REC reference
24/SW/0135
Date of REC Opinion
9 Jan 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The National Registry of Rare Kidney Diseases (RaDaR) is a research initiative by UK kidney specialists. It is designed to gather information from patients who with rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.
If you agree (consent) to take part, information about your treatment and any medications you are on will be entered into the RaDaR database by a member of your hospital’s research team.Research programme
Doctors and other researchers who are interested in your specific condition are working together as part of a Rare Disease Group (RDG). They have access to RaDaR to view your anonymised data and that of others with the same condition. Agreeing to take part in RaDaR doesn’t mean you have to take part in any related research projects in the future if you don’t want to. Taking part in RaDaR is entirely voluntary. If you choose not to take part, it will not affect your treatment or medical care in any way.
Research database title
National Registry of Rare Kidney Diseases
Establishment organisation
The Renal Association
Establishment organisation address
Brandon House Building 20a1
Southmead Road
Bristol
BS34 7RR