Date: 22 July 2016
Alun from Oxford is taking part in a study to help people with Parkinson’s. Our thanks to Alun for sharing his story with us.
What was the aim of the study you took part in?
I am part of a research programme at the Oxford Parkinson’s Disease Centre (OPDC), called the Parkinson’s Monument Discovery Project. It follows individuals over a ten-year period. The aim of the programme is to help predict if people will develop Parkinson’s, understand progression and identify potential drugs. Researchers also hope that this will help develop new treatments to prevent the development of Parkinson’s in people who are at high risk of developing it.
Why did you decide to take part in research?
Although I do not have Parkinson’s myself, I have been told I am at greater risk of developing it because I have a condition called REM sleep behaviour disorder (RDB). I was therefore invited to join the study. I have a background in biomedical research myself, so perhaps I have a natural tendency to gravitate to this type of voluntary activity. Even if I did not have this personal link, I would have volunteered, as I am keen to do anything I can to help medical research and contribute to improvements in diagnosis and treatment. I think most people would have this desire if only they knew how to become involved.
What did taking part involve?
When I joined, I was asked if I could attend the clinic for a follow-up visit every 18 months and complete an occasional questionnaire. These are both very straightforward and involve some very enjoyable memory, dexterity and balance tests, as well as having no practical impact on my other commitments. I have provided blood samples too but this, like all other aspects of participation, is purely voluntary.
Did you benefit from taking part personally?
Although the particular study in which I am participating is not designed to offer personal benefits, many very useful insights into Parkinson’s have already been gained, even though the study is still in its early stages. Online updates allow me to read about the latest study news and I find this extremely interesting.
What would you say to people thinking about taking part in research?
I would definitely encourage anyone to ask about taking part in research when they see their GP or consultant. If you see information about a study that sounds interesting, you can contact the research coordinators to seek further detail. If you can, do join in. Some research might help you directly, albeit after a delay for the study information to be analysed. Even if you don’t benefit yourself, participation offers an unusual way of contributing to the wider community and provides a very real sense of satisfaction. In short, I’d say ‘Just get in touch and go for it!’
If you are interested in taking part in the Parkinson’s Monument Discovery Project, see further information here.
Please note that people who have Parkinson’s are no-longer being recruited to the study.
For further information, contact the clinical research team:
Tel: +44 (0)1865 234892
or +44 (0)1865 223166
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