Volunteering for Parkinson’s Research Studies

What is it like to take part in clinical research?
20 January 2013

Interview with 

Alan Cameron, Dr Kieren Breen, Parkinson's UK

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Hannah -   Alan Cameron, who was diagnosed with Parkinson’s Disease eight years ago has since this been involved in a number of research studies as a volunteer.  I asked him more about the experience.  Was it empowering?

Alan -   I think it’s recognized as a kind of therapeutic effect of volunteering.  It gives you some way of feeling that you can take the fight to the condition rather than just sit and spectate.

Hannah -   So, how does one go about volunteering for such research studies?  I called up the Director of Research and Innovation at the Charity Parkinson's UK.

Kieran -   My name is Kieran Breen.  There are a number of ways which this can be done.  One of these is by taking part in the clinical trial.  This could be for example, testing out a new drug to see it’s better than an existing drug, or it could be using some other sorts of treatments such as physiotherapy, or other sorts of therapies that don’t involve the use of medicines. 

And another way in which we are encouraging people to get involved is by forming partnerships with researchers.  When a researcher wants to carry out a trial that will ultimately help people with Parkinson's, it’s important that they get the views of the people who have the condition at an early stage.  We want to make sure that at the end of the research, that the findings will actually be meaningful for somebody affected by the condition.

Hannah -   And in terms of people with Parkinson's volunteering for these different types of studies, how long should they expect to be donating their time for this type of activity?

Kieran -   This may involve 1 hour per month.  It may involve 1 hour per day.  There are many different types of projects and there are many different ways in which people can get involved.  The part we’ve got to build is to advice people with a wide variety of different areas of research and different ways in which you can get involve in research, and then you can make the decision as to how or which you want to get involved according to what is required, and according to the time that you have available.

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