Last Friday saw my 18 month visit for the MADE trial. This is the drugs trial where I’m taking Minocycline – an antibiotic drug currently being used to treat acne. They believe it may reduce inflammation of the brain in those with Alzheimer’s.
The 18 month stage involved me doing the basic memory test and then me and Sarah answering questions re activities and daily tasks as well as having bloods taken.
I’m still with the York team for this study so Jenny, the research assistant, met us at Sarah’s house which is half way for both of us.
Clinical trials are all based around quantitative data as opposed to qualitative data, proving whether the drugs work or not and I’m sad to say this is reflected in the questions we had to give.. There is no half way house answer – it’s either ‘you can do something’ or ‘you can’t’. For so many of the responses, my actual situation didn’t fit any of the answers so we had to choose the nearest, which were inaccurate. I can still do some things to some extent as I’ve adapted and use strategies to enable me to continue, e.g. Cooking. I certainly can’t cook as I use to as I can only use 1 pan. Yet the nearest answer was that I could still cook as before….
The answers we gave made a mockery of the information collected as the response weren’t a true reflection of my ability. I can’t see what valid information they can collect if the answers we’re giving aren’t precise so I don’t understand the value placed on the data and how they can use it to analyse the drug….
Don’t get me wrong – I understand the need for evidence, I just question the narrowness of the choice of answers that we can select, which in turn leads me to question the validity of the results.
The research assistants have fed this back to the powers that be, but it won’t change things for this trial….It’s makes me appreciate social research so much more as answers are much more open and able to reflect reality.
Last 6 months now, so looking forward to be able to make a better informed decision for my next trial as I was very naive when I chose this one😊
For the first time ever, trying to get the blood out of me, worked first time – so not a pin cushion for once!