Research Projects. Anybody involved?

Everyday living
1

I am currently halfway through a month-long participation in a research project regarding memory/cognition matters and the possible use of “brain training” type programs to improve speed of information processing etc.

The task that I have to do is a very straightforward one (think of the most boring computer game you have ever seen) but it is one that I find very difficult! I don’t know how much value it will be the whole process has been very interesting - although it feels like quite a commitment with regular daily training sessions (five days out of seven) with datalogging. The daily sessions are at home but I had an initial assessment/training session at the University which, as it involved an MRI scan lasted a whole afternoon and I will be having a second assessment when the month is over (but fortunately no MRI scan so only a couple of hours as opposed to a whole afternoon!)

The project is being run by my consultant who is partially employed by the NHS (as consultant neurologist ) and partially by the University neuroscience department/ medical school (where she is a lecturer) She is based in my hospital’s dedicated MS centre so she is very keen to progress various research projects and actively encourages her patients to participate in them. (This one is quite an involved project whereas others are very simple – such as agreeing to have additional tests carried out as part of your routine blood tests.)

Is anybody else involved in research projects? How are you finding them? I am not a great altruistic person to be honest but, the way I look at it, is that whilst it may not directly help me and my MS, it may help to find out more and assist other people in the future.

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I’ve done a research project on smoking and effects on people with ms. I don’t smoke myself but it was to see if smoking could have a negative effect on ms. It was just questions to fill in.

I have also been on the clinical trial for Tecfidera taken with aspirin. I was on the trial for a year. I have been very closely monitored and have had 10 hospital visits in 12 months. I had an electrical device which was linked to the drug company which i had to report back to them so they could see my side effects. I had to report my side effects every day for the first few weeks. I definitely had the drug but i have not been informed yet as to whether i was taking aspirin with it at a high dose, low dose or placebo.

By going on the trial i got Tecfidera before most people. I was a guinea pig for everyone! lol!

Teresa.

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Run a few projects in my time.

This one, Boblatina, sounds more like a Psychology study to me. Or, the sort of joint Psychology/Neuroscience stuff that rizzo used to do,

But first, I have to say thank you for giving me an idea for a mental training aid for one particular memory problem. While nothing may ever come of it, it is making me think like a scientist again.

You may never get to know the value of this study. It may be vital for developing the training program, It may be a vital step into developing a protocol for a bigger study to use that training program. It may “just” be a pilot study to see if there is something worth a lot more study. Any of them are worthwhile.

Geoff