Update on study of diagnostic journeys in lupus/SLE, Sjögren's and UCTD.

[RupertW-SUMS]

Hi

Thanks to interviewees and organisations

I'd like thank all of those who I interviewed for this study in the last few months and to thank Lupus UK, the British Sjögren's Association, and APS Support UK for their help in publicising the study. The interviews provided really valuable insights and information on why some autoimmune diagnoses in the UK can take years (and in some cases decades) and why some are much quicker. Once I've done more analysis, I will post some of the provisional findings and would greatly welcome any feedback on these.

Invite for more interviewees

We are about 15 interviewees short of the planned total. Anyone who meets the study criteria (18 or over, resident in the UK, and diagnosed with SLE, Sjögren's, or UCTD) would be very welcome. Please see below on how to take part.

The interview would be on zoom or phone at a time convenient for you; and take about 40-45 minutes but I could do a much shorter interview if you prefer. You could instead do an email "interview" where I email you some questions about your diagnostic journey, you email back some answers when you have time, and I can email any follow-up questions. All information will be anonymised.

We would like to particularly encourage males, younger people, and individuals from Black and Asian and ethnic minority communities to take part. These groups are currently not well represented in the study and we would like to try and ensure that their experiences are reflected and their voices heard. Some men, for example, find it harder to get a diagnosis for a condition which some clinicians assume mostly occurs among women.

But everyone meeting the study criteria would be very welcome.

How to take part

If you think you might be interested in taking part in the research, please click on this link for more information about the study and how to get involved. swansea.onlinesurveys.ac.uk...

There is also an email address there to email me at if you have any questions.

Also please feel free to post any questions about the study to me below in this thread or message me.

And here is a link to the Lupus UK article about the study.

lupusuk.org.uk/diagnostic-j...

Thanks a lot.

Kind regards

Rupert