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Clinical Trials Day 2025: a personal journey through a neurosurgical advanced therapy trial
Clinical Trials Day (20 May) is an annual opportunity to reflect on all that has been accomplished thanks to clinical trials and the people behind them. In this blog, Gareth has kindly shared his experience of taking part in a neurosurgical advanced therapy trial.
Gareth’s story
Hi, I’m Gareth. Last year, I took part in a neurosurgical clinical trial testing a new gene therapy for Huntington’s disease (HD).
It was a big decision; one that surprised many of my family and friends but one that I’m proud I made. To that end, I wanted to share a bit about what the journey was like, why I chose to say yes and why I would hope others will also choose to embrace advanced therapies.
Before the trial
I was diagnosed HD gene positive in September 2021. This wasn’t altogether a surprise as I had witnessed several members of my family suffer at the hands of this dreadful condition.
Quite soon afterwards, I was invited to the Huntington’s clinic in Cardiff for a chat with Professor Anne Rosser. We talked openly about HD and what options, though limited, were available.
I was quite uplifted by this information, not realising the huge amount of research that was going on behind the scenes.
I decided that I wanted to help in any way shape or form and left the clinic far more hopeful than when I arrived.
Deciding to take part
My decision to take part in my trial was quite simple in the end, but I was certainly helped by background information I had gathered through ongoing meetings with Professor Rosser and my involvement with the HD Advisory Board, which I am a proud member of.
Whilst my initial motivation was personal, I soon became aware of the much wider influence that Advanced Therapies could have on so many lives.
The following consultations with Professor Liam Gray and his team only further enhanced my determination to get involved.
I appreciated the honesty and respect shown by everyone and I felt a high level of trust immediately. This connection was vital for me and helped erase any doubts in my mind.
The clinical trial experience
Committing to a trial isn’t just about the surgery – I learned that quite quickly after numerous scans, examinations and blood tests. Each part of the process is vital, and I could sense the collective commitment to this project from every individual team member.
Even the hospital staff, though not directly involved, showed huge interest and enthusiasm towards this ground-breaking treatment. This certainly put me at ease as, quite honestly, I am not a fan of hospitals!
Whilst I can’t recall the surgery, I do remember the moment I woke up with a sense of relief and an element of surprise about how good I felt.
The aftercare was immediate and detailed, and I felt comfortable and well looked after.
Reflections
Taking part in the trial gave me hope, and I’m proud I did it.
Even if it hadn’t helped me personally, knowing I contributed to something that might help others was worth it.
I’d encourage anyone offered the chance to be part of research to at least find out more. If I was asked to do it again, I would.
Advanced Therapies offer a new and exciting route into tackling previously untreatable conditions, and I feel privileged to have experienced it first-hand.