What’s it like to take part in statin research?
Simvastatin is a cholesterol lowering drug which research suggests may be able to protect the brain cells lost in Parkinson’s and slow the progression of the condition. Now the PD-STAT trial is testing the potential of this drug in people with Parkinson’s.
We met Michael Broad, a participant in the PD-STAT clinical trial, to find out what it’s like to take part.
It’s fair to say that my life has been full and varied — I’ve had many different jobs, from engineer to police officer and many hobbies such as electronics and cycling. I’m always looking for stimulation and since being diagnosed in 2013, just two years after I chose to retire, I have not stopped.
I have taken part in many research studies, particularly online questionnaires and phone interviews. As a member of the Parkinson’s UK Research Support Network, opportunities like this are emailed to me and they are usually quick and easy to do at home.
“After taking part in studies like this I wanted to do more.”
In October 2018, I will come to the end of a two-year trial called PD-STAT, which looks at statins as a neuroprotective treatment. The trial is ‘double blind’, which means that neither which means neither we participants or the researchers know who is taking the statins, and who the placebo. I didn’t let this put me off though, as the comparing those who took the active drug to those who took the placebo is an important part of the trial.
I first heard about the trial in an email from Parkinson’s UK, and after having a chat with my GP and my partner, Helen, I registered my interest with Leeds General Hospital to be assessed for suitability as a candidate.
The research team hoped to find over 200 people with Parkinson’s to take part. Finding enough people to take part often causes delays in clinical research.
The day of my first visit began with a train ride with Helen, who could see how excited I was. The specialist nurse met us at the station. Since this first day the staff have always been excellent — they treat me with such respect and answer any questions I have. I always have communication with the team, including when I’m at home. And there’s no need to worry about costs as all my travel expenses are reimbursed.
At the beginning, tests were performed to establish a baseline. Some were standard examinations assessing balance, gait and walking. We also had to do memory tests, one of which involved saying three words and recalling them again at the end of the visit, and spent time on the computer doing response tests.
What did surprise me was the improvements to some tests by resuming the medication.
I have been continuously monitored throughout the trial, and at the end of the study will have visited the hospital eight times over the two years. A few of these times I must be in the OFF state. My Parkinson’s medication had to be stopped the night before the visit, and not taken again until after the assessments have been carried out the next day. The OFF state will be different for each person, all I can say is that at this point for me, it is not too bad.
The team asked me if I’d take part in a genetic sub-study linked to PD-STAT, so off I went on that one too. I understand that research might not be for everyone but it can’t go on without people like me taking part. I feel that I can’t just sit and look on. The more people who take part the quicker we can find new and better treatments.
The results of the trail are some years away, but regardless of the outcome of the research, I’d still like to take part again in the future. It will also be a while before I find out if I’ve been taking the active drug or the placebo, which I am quite eager to find out. Friends and family have asked which I think I am on, but I honestly don’t know as I have nothing to compare to.
I feel positive about the future of Parkinson’s research — there’s so much going on. We all just need to get involved.
Help researchers find better treatments and a cure
Today, all over the country, clinical research studies need people to take part — but one of the problems can be finding those opportunities. Now you can discover opportunities to take part in local research with the Parkinson’s UK research hub.
- Step 1, visit parkinsons.org.uk/takepartresearch
- Step 2, enter your location or postcode
- Step 3, discover research opportunities