One of the things I spoke about with my consultant on Monday was the fact that I hadn’t heard anything about the self assessment research written about in this earlier blog. The premise of the research was: due to the long waits between consultant visits, the team at UCL wants to test how people with MG can usefully self assess their condition at home. Sadly, I was too late to take part as the physio therapist running the trial had found enough candidates, but there was another option.
UCL is compiling a research database of people with a range of conditions, including myasthenia, and without. It’s called the UCL Bioresource and to be part of it all you need to do is give blood/saliva swab and fill out a questionaire about you and your family’s health.
Once you give your details, you will be contacted individually from each research project and you can choose at that point if it’s something you want to be part of. There was a question about taking part in research for private companies, which I ticked unsure about but as the nurse pointed out you can assess the merits of each project (and also they are the ones with money).
While having my DNA on a database freaks me out a little – you never know in what ways it could be abused – you are given a number so your name isn’t attached to it.
It’s for people in and around London, so if you are interested in getting involved take a look at this information page and get in touch with the following contact details:
Telephone: 0203 4475369