Are you starting treatment with a biologic, biosimilar or other new therapy for your lupus?
You could be eligible to join the BILAG Biologics Register (BR) and help them collect important data about the safety and effectiveness of different lupus treatments.
This is an observational study (not a clinical trial), so the research team simply watch what happens to someone when their doctor prescribes a particular therapy.
The aim is to look at the use of different therapies in the real world, so they include people who are sometimes excluded from clinical trials – for example, those with other serious health conditions alongside their lupus, and those with severe kidney involvement. They are also able to follow participants for longer than clinical trials can, which lets them monitor long-term safety and effectiveness.
The BILAG BR has been running for over 15 years, and during that time, publications using study data have changed clinical practice and influenced guidelines on the treatment of lupus.
Location: In person – 60+ locations throughout the UK
Duration: This is a long-term study, so the team aims to follow participants for at least 5 years
- Read the Participant Information Sheet
- Once you are happy with the information, sign the consent form
- The study is observational, so the research team simply collects data from your routine clinic appointments. You do not need to have any study-specific visits. They’ll follow your progress through your hospital care team, who will collect data on your lupus symptoms and treatment when you attend your routine hospital appointments
- If you agree, you will be asked to complete some quality-of-life questionnaires so that the team can also collect data about how you are feeling, and how your lupus is affecting your day–to–day life
For more information: Visit the BILAG BR website or email [email protected]
You may be able to join if you:
- Have lupus
- Are starting treatment with a biologic, biosimilar or other new therapy for your lupus
- Are aged 5+
- Are a patient at a recruiting hospital. There are 60+ recruiting hospitals in the UK, and more hospitals are continuing to join the study – if you are interested, please ask your hospital care team if they are taking part
Payment: Not provided
Expenses: Not provided
Feedback: For updates about discoveries from the study, visit the “Our Discoveries” on the BILAG BR website
You can speak to your hospital care team or contact [email protected]