***This survey is now closed. Thank you to everyone who took part. You can read more about the future of this project at healthunlocked.com/lupusuk/... ***
Hi everyone,
I'd like to say a massive THANK YOU to everyone who has taken the time to complete the LUPUS UK/Cambridge University research questionnaire about diagnostic journey and the level of medical support you feel you receive. We've had over 160 responses so far which will help to inform doctors, academics and policy makers of your experiences and suggestions to improve diagnosis and care for people with lupus and associated conditions.
If you have not yet had time, please use this online link to take part in the study;
We value all responses (positive and negative) from male and female members of this online community, so it would be great to hear from you whether you have lupus or another related connective tissue disease; are still in the diagnostic uncertainty period; and whether you are from the UK or overseas.
Please do complete the survey if you feel well enough as the more responses we get the more impact it will have on identifying common experiences and helping to inform improvements. Make your voice count!
Please read the information sheet (link at the start of the online questionnaire) BEFORE completing.
If you have any questions, MelanieSloan from Cambridge University, is the researcher coordinating this study, so please feel free to email her at mas229@medschl.cam.ac.uk. She has lupus herself and is one of our community members so will be very understanding and would love to hear all your experiences.