Dr Shipa Muhammad is creating a new tool to help measure and monitor how active someone’s lupus is. The aim is to create a questionnaire that can be completed entirely by patients and potentially used for remote assessments. It is based on the checklist that lupus doctors already use in clinic, and could help flares to be spotted and treated earlier.
He is looking for feedback to help improve the tool and make sure it works as well as possible in real life.
Deadline to provide feedback: Friday 11th December 2026
When and where: In your own time, online
What’s involved:
- Read an optional review guide (5 mins)
- Look through the questionnaire and share what you think, including any wording you would change (this could be via email or through a survey)
- There are 129 questions in the questionnaire, but you do not have to look at all of them – just choose what is of interest to you
Total time: around 20 mins to 2 hours (the time it takes will depend on the depth of your review and the number of questions you look at)
People they’re looking for:
- Aged 18 and over
- Living in the UK
- Living with any type of lupus, or caring for or supporting someone with lupus
- Everyone is welcome, whatever your background or experience of lupus. You do not need to be a patient at any particular hospital or be confident with technology. We would especially like to hear from people from Black, Asian and other minority ethnic backgrounds, who are more likely to be seriously affected by lupus
Keeping things private: When you review the tool, we ask that you keep it private. Please do not share it with anyone else, as some details are confidential, sensitive or subject to intellectual property rights.
Payment & Expenses: Not provided for this online feedback. If the research team’s funding application is successful, they hope to offer paid involvement later in the project (for example, patient advisory meetings).
How your input will be used: Your comments will help the research team to improve the wording, clarity and content of the questionnaire so that it makes sense to people living with lupus. They will share your feedback with lupus specialists from across the UK, who will use it alongside their own views to agree the final version of the tool. The improved questionnaire will then be tested in hospital lupus clinics (at UCLH, Cambridge and Leeds). If it works well, it will be built into the electronic patient record so that it can be used as part of routine lupus care. A summary of patient feedback will also be included in the researchers’ funding application, to show how people living with lupus are shaping this project.
Feedback: Within three months of the closing date, the research team will send Lupus UK a short “you said, we did” summary of what they heard and what has changed. It will be shared with the Research Network. The team will also share updates on progress, including the outcome of their funding application.
Interested in getting involved? Email Francesca at [email protected] to receive the questionnaire and review guide. Please mention the opportunity you are interested in.
Contact: If you have any questions about the tool, please contact Dr Shipa Muhammad at [email protected]. For questions about the review, please email Francesca at [email protected].
Organised by: Dr Shipa Muhammad (University College London Hospitals NHS Foundation Trust, University College London, and Cambridge University Hospitals), working with other colleagues at Cambridge University Hospitals, Leeds Teaching Hospital, and the national BILAG lupus group, with support from Lupus UK to gather patient feedback. The project does not yet have dedicated funding; the research team are applying for funding to take it forward.