Rare kidney diseases can devastate people’s lives, but because the individual diseases are uncommon, conducting research to improve treatment options is difficult. The National Registry of Rare Kidney Diseases (RaDaR) gathers together information from people with certain rare kidney diseases to make it easier to research these conditions.

Why is this work needed?

Some kidney diseases are so rare that conducting research on them is very difficult. Hospitals may only see a few cases of these conditions and so conducting research into why they occur and how they can be treated may be impossible. For conditions like this, it is vital that doctors are able to share examples and expertise to guide their decisions. Researchers also need to have as much data as possible to support their search for new treatments.

What is happening?

RaDaR is a registry of data on rare kidney conditions, covering multiple different treatment centres. There are currently over 12,500 recruits, from 85 hospitals across the UK. Patients can access their own clinical data online via the Patient View website. Researchers can use the platform to collaborate and share information with colleagues and also to recruit people to clinical trials.

What are the benefits?

RaDaR supports research into a range of rare kidney diseases. For example, membranoproliferative glomerulonephritis Type 2 (MPGN) is a rare condition which tends to affect very young children, causing the body’s immune system to attack the kidneys, slowly destroying them. A recent piece of research using data from RaDaR has suggested a possible new treatment that could significantly slow the damage caused to the kidneys of people with MPGN.

By enabling patients to access their own records more easily, RaDaR also supports patients to take a more proactive role in managing their own health data.

What type of data is involved?

The data contained in RaDaR is defined by the UK Renal Registry in association with Rare Disease Groups consisting of experts in each eligible condition. Data includes demographics, blood and urine results, medications, transplant and dialysis history, genetics and comorbidities.

Selected data is extracted from Patient View (PV), an online system that records renal patients’ results, medications and clinic letters. RaDaR patients are given a secure log-in to access their own data via PV.

Patients are asked for their consent to participate before their information is entered into the registry. RaDaR is held within the NHS firewall and data is de-personalised and password protected. Ethics is overseen by the South-West Central Bristol Research Ethics Committee.

RaDaR’s governance is under the authority of the Renal Association of Great Britain, the professional body for nephrologists in the UK, via its Rare Disease Committee (RDC) and Renal Information Governance Board (RIGB).

Subject to approval by the RaDaR Operational Management Board, researchers can access de-personalised data to support their research.

Who is funding and collaborating on this work?

RaDaR is supported by a variety of kidney charities including the British Kidney Patient Association (BKPA), Kidney Research UK (KRUK) and the Polycystic Kidney Disease (PKD) Charity. Management is undertaken by the UK Renal Registry and supported by NHS England.

Where can I go for more information?

Rare Renal – Information on Rare Kidney Diseases