National Registry of Rare Kidney Diseases
Research type
Research Database
IRAS ID
10926
Contact name
Ron Cullen
Contact email
Research summary
National Registry of Rare Kidney Diseases
REC name
South West - Central Bristol Research Ethics Committee
REC reference
19/SW/0173
Date of REC Opinion
9 Oct 2019
REC opinion
Favourable Opinion
Data collection arrangements
The National Registry of Rare Kidney Diseases (RaDaR) is a research initiative by UK kidney specialists (the Renal Association and the UK Renal Registry). 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. You will be given login details to see your information online via a website called Patient View (www.PatientView.org), if your hospital is signed up to this.
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
1st floor Brandon House Building 20A1, Filton20
Southmead Road
Bristol
BS34 7RR