Help researchers to plan a new lupus study
Lupus is an incurable disease of the immune system. Researchers at the NIHR Manchester Biomedical Research Centre are developing a study which aims to guide the choice of the best treatments for individual patients and the development of new drugs in in the future.
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Lupus affects the immune system, causing joint pain, extreme tiredness and rashes. There is currently no cure for lupus, but the symptoms can often be treated with medication.
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The condition is relatively rare, and because of the variety of symptoms that people experience it can be difficult to study. There has only been one drug licensed to treat it in the past 50 years.
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You can have a say in the way that we do this research by joining an online discussion (16.2.21) and sharing your views and experiences. The discussion will last for up to 90 minutes and you will be sent a document to read beforehand. People who take part will receive a payment of £40.
Help to shape lupus research in Greater Manchester
Share your views about how new lupus research is designed.
How to get involved
Take part in an online discussion
Join a relaxed informal online group, where everyone will be invited to give their views about the study. The aim of the discussion is to help researchers to develop a study that will investigate how to predict which patients are more or less likely to respond to treatment changes following a flare.
The online discussion will take place on Tuesday 16th February 10.00-11.30am.
You don’t need to have any previous experience of health research to take part, just be happy to share your views in a group discussion.
There will be around 6-8 other people in the group. A member of the Vocal team and a researcher will lead the discussions. We’ll send you some some written material to read before the meeting and ask you to share your views in the meeting. The group discussion is entirely confidential, the names of people who take part will not be shared outside the group. The session will be recorded to make sure we don’t miss anything in the discussion.
Information and quotes from the discussion will be used to help shape the research study. No names or identifiable information from participants will be included.
To take part in the Zoom call you will need to:
Be happy to participate using Zoom on a computer
Be happy to read two patient documents ahead of the Zoom call
Agree for the session to be recorded
Agree to maintain confidentiality
Everyone who takes part in the online discussion will be paid £40. In order for the payment to be processed you will need to provide your bank details. Payments can take several weeks to be processed.
Chat with us on the phone
If you’d prefer to speak on the phone, there are some appointments available. Please contact Susannah at susannah.williams@mft.nhs.uk for more information
We are committed to making our opportunities as inclusive and accessible as possible. We want to support you to be involved so if there is anything that we can do.
If you’d like to take part in the group, or have any questions, please click on the ‘Contact us’ button below and provide your contact details and we’ll get back in touch.