Why have you been asked?
Obinutuzumab is a medicine that has just been approved for the treatment of kidney disease in people with lupus. Michael Robson’s research team are planning a study on the best way to use it. They would like to ask people with lupus for their views.
Watch a video summary here.
What is the question their proposed study will answer?
Obinutuzumab is usually given as initial treatment and then again 6 and 12 months later. The additional doses at 6 and 12 months may not be needed, and they will look at this.
What is their proposed study?
People who have had a good initial response to obinutuzumab at 6 months, will be put into one of two groups:
- One group will receive additional obinutuzumab at 6 and 12 months
- The other group will receive additional obinutuzumab only if their clinical team thinks it is needed
A good long-term outcome is expected in people with lupus who have a low level of protein in their urine. Therefore, one year later, they will compare the level of protein in the urine of people in the two groups. To minimise the burden and inconvenience for people, no visits will be required outside of usual clinic visits.
They are not asking you to part in this study at the moment. They would like to ask you some questions that will help them to plan it.
Deadline: Tuesday 30th June
Location: Online
What’s involved:
- Complete the short online survey (5 to 10 minutes)
- This includes sharing if you would like to be a member of a patient advisory group for the study
Who they’re looking for:
Someone who:
- Lives in the UK and is aged 18 or over
- Is living with lupus
Payment: Not provided
How your input will be used:
The team will analyse your feedback together with all the responses. It will help them to:
- Plan the best way to design the Obinutuzumab With Lupus nephritis (OWL) Trial
- Understand how best to involve lived experience in the design process
Feedback: If the research study is funded, Dr Robson will share a summary of the research findings
Interested in taking part?
- Complete the survey here
- If completing the survey is difficult, you may be able to share feedback on the questions by phone or Teams, depending on staff availability. Please contact [email protected] and we’ll do our best to help
Contact: For more information, email Dr Michael Robson at [email protected]
Resources: Watch a video summary here
Funded by: This survey has no specific funding. Dr Robson is based at Guy’s and St Thomas’ NHS Foundation Trust in London.