Melanie Sloan, a researcher in Behavioural Science at the Department of Public Health and Primary Care, Cambridge University, kindly got in touch with me to promote her research being conducted on medical relationships, disease symptoms and mental health for those with rare diseases. It’s been designed with and by patients, and top rheumatologists, and is an ideal opportunity for patients with Behçets to have their voice heard, symptoms more widely understood, and advocate for more support.
The more of you that participate (world-wide), the more the collective voice of Behçet's patients will be taken note of – particularly regarding the complexities and impact of the condition on individuals. When the survey opened 350 responded with completed surveys in the first 24-hours. Not sure how many of the 5,000 members signed-up on this HU site have Behçet's but I’d like us to dominate the statistics! I couldn’t attend the recent International Conference for Behçet's Disease in Athens last week, as my wife kindly passed on Covid-19 to me, despite my best efforts avoiding it this past couple of years! But listening into the presentations, there are a lot of individuals out there earnestly attempting to understand our condition; but it is fickle and complicated. Numbers count, so please add to the chorus.
Please be advised that the survey can take between 20-60 minutes to complete, depending on how much detail you wish to include. You can stop, and return to the survey at any time to spread the effort, particularly if you are tired. (There is a suggested break-time just over half-way through but it will let you pick up from wherever you stop; provided you use the same device (so don’t swop between a phone, laptop or iPad etc!)). The more detail listed the more evidence is gathered!
Herewith the Patient Participation Sheet, describing the background, ethics etc to the studycambridge.eu.qualtrics.com/...
Here is the link to the survey – which I will be promoting to Behçet's UK membership also. cambridge.eu.qualtrics.com/...
The INSPIRE Study has been generously funded by LUPUS UK, for whom I thank.
All the best to everyone. Never give in ….!
Tony
Chair Behçet's UK
