A research team at UCL are planning a study and want to get the views of people with lupus nephritis so they can make sure they are meeting patients’ needs in the study design.

What is lupus nephritis?

Lupus is an auto-immune disease, which means that the immune system is dysfunctional and attacks the body’s own tissues. Sometimes the immune system attacks the kidneys and causes inflammation or damage, and this is called ‘lupus nephritis’. About one in three people with lupus have kidney involvement, with younger patients and people from Black or Asian ethnic backgrounds more likely to develop kidney disease.

Why are the researchers planning this study?

When people are given treatment for lupus nephritis, it can be difficult for doctors to know how long to give treatment for. There are blood and urine tests which can suggest how inflamed the kidneys are, but they are not very good at finding small changes and are not very “specific”, meaning the results could be due to something else. A kidney biopsy is more accurate, but is invasive for patients. Because there isn’t an easy way of accurately measuring inflammation, it means people are often on treatments for a long time as doctors can’t be sure when it’s safe for them to stop. Although this can help to prevent relapse, it means people may be experiencing difficult side effects or be at increased risk of infection for longer.

Some recent research has suggested that a biomarker in the urine, called “CD613”, could be a good marker for kidney inflammation. As this could be measured through a urine test, if it worked it would mean there was a way of accurately measuring when treatment could be stopped without an invasive kidney biopsy.

The planned study

The study would be investigating whether treatment for kidney involvement could be personalised by using the biomarker “CD613”. A research team led by Prof Alan Salama at UCL want to know what people with lupus nephritis think about how they plan to do the research.

How can I tell the researchers my views?

If you currently, or in the past, have experienced lupus nephritis, you can answer the study team’s very short questionnaire to tell them what you think. The questionnaire tells you about different parts of their planned study and asks if you would be happy to do them if you were taking part in the trial. It also asks about your past treatment for lupus nephritis and gives you a chance to add any extra thoughts or comments you have.

The closing date to give your views is 31st March 2024.