Dundee Research Interest Group

How did you get involved in the trial?

Having previously participated in the ROPAD and Front line genetic trials, and so discovered that I have a variant of the GBA1 mutation I was keen to be involved in any trials aimed specifically at my genetic mutation. My consultant Esther Sammler was aware of this.  She had already started work on a LRRK2 genetic mutation trial drug here in Dundee and is now recruiting participants for the Acitivate Study trial, for which I am very grateful!

What is involved in preparing for participation?

The first prerequisite, clearly, is to have the relevant gene mutation.  Secondly you had to have been diagnosed within the last 7 years. I then was given a lot of paperwork to read!  The requirements for full consent from every participant in a drugs trial are very detailed and quite onerous both for the research team and the participant.  The details to which I consented have already been updated once, since my participation began which requires signing everything again.  

What did you have to do before you took the first pill?

I had to meet my research support team, an NHS doctor and a senior clinical studies officer who, along with my consultant, will support me throughout the trial at Ninewells.  We went over all of the paperwork and they verified that I fully understood what I was signing up for.  A few weeks later when all of the blood tests taken had shown clear with respect to eligibility to go ahead I went back for my 'Baseline' visit.  Again blood and urine tests were taken and lots of physical and mental measurements noted.  Then it was time to kit me out with my smartwatch and smartphone which will help to track any changes during the trial, between the clinic visits.  I was handed my first tablet to take and a small white plastic pot with a trial label, containing 35 small tablets. 

7 pills in on your one a day regime, how are you feeling?

It has taken a little while to get used to using the phone and watch correctly and making sure that my exercise and movement is being properly recorded.  I am still taking exactly the same medication regime as before I started on the trial and so don't feel any different, so far.  I have to remember that I may well be taking the placebo.  There are also two strengths of the active drug being trialled one at 10mg, which may prove to have no effect, and one at 60mg.  So in this trial there is a 2 to 1 chance of being given the active drug, but as it is a "double blind" trial, I dont know and neither does my team of researchers, which one I am taking.......

Did it take you a long time to decide to take this on and how do you feel about your decision now?

I feel good about the decision, although it does feel like a long commitment in terms of time (78 weeks) and I am still getting used to making sure I fit everything in with my normal daily meds routine.  I was a bit stressed leading up to the start of the trial, you obviously have to consider that there may also be unwanted and unexpected side effects to contend with.  But, if I want to see this drug available on the market it has to be tested properly so we need trial participants to sign up and go through with it - I'm keeping all my fingers and toes crossed!