A new study is investigating why it takes some people a long time to get diagnosed with systemic autoimmune rheumatic diseases (SARDs) like lupus, UCTD, and Sjögren’s, but other people have a much shorter time to diagnosis. The researcher hopes the findings will help improve healthcare for people with SARDs.
You can read more here: https://swansea.onlinesurveys.ac.uk/autoimmune-diagnostic-journeys
What is this study about?
Systemic autoimmune rheumatic diseases (SARDs) are conditions like lupus, Sjögren’s, and Undifferentiated Connective Tissue Disease (UCTD). Although early diagnosis is very important to limit long-term damage from being untreated, it takes most people a long time to get diagnosed with these types of conditions.
To improve the time-to-diagnosis of SARDs, we need to understand what’s working well and what’s not working well. Previous research has suggested some ways to help, such as teaching doctors more about SARDs and if doctors from different specialties worked together more, but more research is needed into what patients think and what they have experienced.
The researcher, Rupert Harwood, is based at Swansea University and talked about why he was doing the research:
“From personal experience and having interviewed others for the Cambridge lupus/CTD studies, I know that autoimmune diagnostic journeys in the UK are a great deal longer and more difficult than they need to be. Drawing upon patient and clinician experiences and insights, the Swansea University study aims to contribute to improvements in clinical practice and in particular to reductions in diagnostic delays.”
Who can take part?
People can take part in the study if they are 18 years or older, live in the UK, and have been diagnosed with one or more of the following SARDs:
- Systemic Lupus Erythematosus (SLE)
- Undifferentiated Connective Tissue Disorder (UCTD)
Participants will talk to the researcher about their experience of getting a diagnosis, including what they felt slowed it down or sped it up. This research interview would last about 35-40 minutes, and can take place on the telephone, via Zoom, or over email. You are welcome to take any breaks you like, and/or to have a shorter interview, if that would help you to take part.
How do I find out more?
If you are interested in taking part, you can read more information about the study here: https://swansea.onlinesurveys.ac.uk/autoimmune-diagnostic-journeys
You can also email Rupert, the researcher, to ask any questions or to sign up, at firstname.lastname@example.org