For more information and/or a study participant consent form, please email Rupert (the study researcher) at his university email address: 2150530@swansea.ac.uk
1. Introduction
This Swansea University Medical School study is investigating why some systemic autoimmune rheumatic disease (SARD) diagnostic journeys are protracted and why some are a lot quicker. It is hoped that the findings will help facilitate improvements in healthcare policies and in clinical practice. We are particularly keen to hear from patients about their experiences, as the patient perspective has in general been neglected in research into the diagnostic process.
2. Eligibility to participate
Individuals who are 18 years or older, resident in the UK, and have been diagnosed with one or more of the following SARDs, are invited to take part in the study:
- Sjögren's
- Systemic Lupus Erythematosus (SLE)
- Undifferentiated Connective Tissue Disease (UCTD)
3. Who is conducting the study?
Rupert Harwood is conducting the research as part of his PhD study (within Swansea University Medical School). He has worked for the last few years on the Cambridge University SARD studies. Here is a link to his most recent co-authored article. For examples of his previous healthcare research, please see his ResearchGate page.
He has been diagnosed with several systemic autoimmune diseases.
The PhD study is being supervised by Dr Alison Porter and Dr Ashra Khanom (who can be contacted at Swansea University Medical School).
4. Your role if you decide to take part
This would involve a Zoom, telephone, email, or other type of interview (of about 35-40 minutes) with Rupert at a time/date convenient for you during the next few months. He would ask, for example, about what things you think speeded-up your autoimmune diagnostic journey and/or what things you think slowed it down. Information from the interview would be anonymised.
Please note that we would be very happy to make adjustments you suggest to facilitate the interview, such as, for example, if you have a hearing or visual impairment, anxiety, fatigue, etc, or for any other reason.
5. What to do if you are interested in taking part
If you think you may be interested in being interviewed for this study, please email Rupert at: 2150530@swansea.ac.uk
He will email you a participant information sheet and participant consent form; and would be happy to try and answer any questions that you may have about the study, the interviews or any related matter.
If you decide (having read the participant information sheet and having had satisfactory answers to any questions) that you are willing to be interviewed, then please email the completed consent form back to Rupert.
Please note that you would be welcome to change your mind about being interviewed at any time; and there is no pressure to discuss anything in the interview you would prefer not to discuss.
The requirements of data protection law and all other legal requirements will be complied with in the conduct of this study.
Thanks for taking the time to read this.
