Your views needed for a LUPUS UK-funded research ... - LUPUS UK

LUPUS UK

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Your views needed for a LUPUS UK-funded research project - Investigating neurological & mental health symptoms in lupus and related diseases

Paul_Howard profile image

LUPUS UK is funding Cambridge University to carry out a research study into neurological and mental health symptoms experienced by people with lupus and related diseases.

The researchers need your help in deciding which symptoms to include in the survey. LUPUS UK and the study team would really appreciate you completing this brief questionnaire on symptoms. It should take about 5 minutes. Thank you!

cambridge.eu.qualtrics.com/...

29 Replies

Completed ✅

Hi Paul that’s me done it

Important research. Glad to hear it is being funded. ✅

✔️Done..great research 👍🌈😽😽xx

Hi Paul, can I fill this one out, or just for UK. Hope all is well. Keep up the great job you do for so many. Blessings, The stormy sunshine

Hello thestorm, please do complete if you'd like to. The study that will be informed from this brief survey will be for all nationalities. Thank you!

All done ✔️. This will be valuable research. 😊

Completed Paul.

Done.

Sometimes it's not great to be able to tick all the boxes, sigh

Completed

Thanks very much Paul and to everyone who has completed the survey - very helpful in helping us decide which symptoms to include in the study.

Our teams' research philosophy is that the research ideas and direction is decided by the people most important in research - which is you all. So if anyone has anything they feel is important for us to research in terms of neurological problems or mental health please do email me on mas229@medschl.cam.ac.uk

Thank you :)

Is this just for people with a definitive diagnosis of Lupus only? For instance I was diagnosed with SLE in 2009, changed to Bechets in 2010, back to Lupus in 2011, then UCTD, now query Lupus, query Bechets.

Hello CecilyParsley, No, it's for all related diseases and you'd certainly be eligible and your experiences very valued.

This one has closed now though and was just a quick list of symptoms to inform our main survey which should be out soon. So please do complete that one when it is advertised on here. I hope you are doing as well as possible.

Thanks Mel. I am never sure whether to complete things or not. I am doing pulmonary rehab currently and although I still haven’t had my leg MRI for my hamstring tear still, my legs are getting stronger and I am falling less which is a huge bonus. I hope that you are currently stable and enjoying the milder weather? Xxx

Oh yes please do always complete anything from me or our Cambridge study team as all these diagnoses have so much overlap and so many have them changed - and then changed back...

That sounds like there are some positives for you although hopefully MRI will be soon as that injury must be holding you back too. I'm doing OK thanks, have had a few long hospitalisations this year but try and see the positive in that it gives me added insight into the good, bad and dreadful patient experiences that we need to work on in the research!

Oh I am sorry Mel. I really hope that you feel better and more stable. Thank you for all you do for all of us. Look after yourself xxx

Just completed.

Completed

All done Paul xx

Completed. Important research

Thanks so much to everyone who completed this quick pre-survey. We had a huge - and quick- response and have enough (nearly 400 completed which was fantastic!) responses to now help us decide which symptoms we need to explore more in the main survey.

This survey is now closed, but the main own should be online in the next month or so and we'd very much appreciate your responses :)

Hi Paul

What do you mean by related diseases’

Than you.

I think its a big problem for us to communicate how debilitating Lupus is. Also for others to understand the condition.

Done

Paul_Howard Completed, thank you!

done...

Completed

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