Patients

The patient voice is at the centre of everything at Kidney Research UK and Alport UK.

Patients are members on the strategic advisory board for the Stoneygate and Kidney Research UK Alport Research Hub and will be involved in all decision making for future hub projects. If you are a patient who would like to get involved in research, please visit Kidney Research UK or email Patients@kidneyresearchuk.org.   

On this page:

• RaDaR and clinical trials
• Patient support

RaDaR and clinical trials

RaDaR is a national registry which collects data on kidney conditions which are classed as rare. The aim of the registry is to help improve our knowledge and understanding of rare kidney conditions, such as Alport syndrome, and to ultimately help others through research.

How we collect data 

The registry uses data that is collected by your hospital team as part of your routine appointments, and other national reporting systems where applicable. Nothing else is required from you or your child other than your consent to participate.  

Access to the data 

Anyone wishing to use the information collected in RaDaR needs to go through an application process, and if agreed, the information shared is fully anonymised. This means that no personal data is shared with the researchers. 

How to get involved 

If you are interested in getting some more information about RaDaR and potentially contributing to the registry please contact radar@ukkidney.org providing the details of the hospital site where you are currently treated. 

Clinical trials 

As part of the Hub’s objectives to advance treatments for Alport syndrome we facilitate and support new clinical trials at local hospital sites. Our own Hub Director Prof. Rachel Lennon is the Lead Investigator on several of these trials. 

Current and recent examples of these trials are as follows: 

• A Phase 2a randomised study of Setanaxib in patients aged 12-50 with Alport syndrome. Sponsored by Calliditas Therapeutics. This study recently closed to recruitment and final participants will complete the trial in the summer. The next phase is currently being planned. 
• A Phase 2 open-label study of Sparsentan in children and adolescents with selected proteinuric glomerular diseases. Sponsored by Travere Therapeutics. This trial is currently open to recruitment. 
• A Phase 3 randomised study of Finerenone in children 6 months to 18 years of age with CKD and proteinuria. Sponsored by Bayer. This study is currently recruiting and has an open label extension for participants who complete the randomised trial.   
• A Phase 2 open-label study of an investigational drug – R3R01 – in patients aged 12+ with Alport syndrome and FSGS. Sponsored by River 3 Renal Corp. This study has recently closed to recruitment in the UK. 

For more information on clinical trials please visit clinicaltrials.gov.

< Back to top

Patient support

Here are some links to organisations that can offer support to patients, carers and families:

Alport UK

Alport UK is a patient-led organisation dedicated to empowering individuals and families living with Alport syndrome to enjoy the best possible quality of life.

Drawing on our continuous learning and collaboration with individuals, families and the scientific community, Alport UK aims to facilitate a support and information network for those affected by Alport syndrome.

< Back to top