Taking part in clinical trials – A patient’s perspective

Michael Newton, a patient at Imperial College Healthcare NHS Trust, was recently diagnosed with Alzheimer’s disease. Here Michael and Ros, his wife and primary carer, explain how they navigated an unexpected diagnosis, why they joined a research trial at the Trust’s memory unit, and what it’s like to participate in research that could change the lives of others.

Ros: When Michael was diagnosed with Alzheimer’s disease just over 12 months ago, it came as a huge shock for us both. Given that Michael is still relatively young at 60, neither he nor I was expecting an Alzheimer’s diagnosis. But we’ve been very fortunate to have the support of the specialist memory team at Charing Cross Hospital, led by consultant neurologist Dr Richard Perry. The whole team has picked us up, reassured us and have looked after us every step of the way. They made sure we had all the physical and emotional support we needed and put us in touch with people in a similar position through the Alzheimer’s Society.

Once the initial shock of Michael’s diagnosis began to wear off we started to do our research, and quickly found that the drug aducanumab was showing some promising early results in trials in the United States, the likes of which have not been seen before. The results of one trial indicate that the drug can slow the decline in memory and thinking skills in some people with Alzheimer’s. We knew this was the trial that we wanted to get Michael into — we just hoped we would be able to get into one locally.

It is quite daunting going through this process of looking at what trials are available to you. You worry that if you don’t get on a trial straight away you might miss the boat, so when Dr Perry gave us the chance to participate in the aducanumab trial being led by Imperial, we didn’t hesitate.

Michael is someone I love very much so for me to put my trust in someone else is not something I would do lightly. I have complete faith in the team at Charing Cross Hospital, they always listen to me and any concerns I may have no matter how big or small, I cannot praise them enough.

Michael: As it is still very early in the trial, it is not possible to tell whether or not the drug slows down the progression of Alzheimer’s. However, given the results of earlier trials, we are optimistic that it will help lead to the breakthrough researchers and sufferers around the world are hoping for.

As part of the trial, I visit the Imperial Memory Unit at Charing Cross Hospital for regular check-ups. My consultations consist of some blood tests, memory tests and an infusion — or drip. I haven’t experienced negative side effects as a result of being on the trial.

Naturally, it is worrying to be diagnosed with a progressive illness like Alzheimer’s, particularly as there are few treatment options currently available. However, being part of a research trial gives me a sense of comfort because I know I am helping to support critical research in the only way I can, so that the prognosis might be improved for future sufferers around the world. In a sense, you could say that we are all in it together.

When we go in for our regular sessions at the Imperial Memory Unit, the atmosphere is always calm and friendly; it’s more like we are catching up with friends than going to a hospital clinic. The team at Charing Cross are just fantastic.

To other patients and carers who are considering their options after diagnosis, I would say if there is a research trial available for you to take part in do your research, discuss your options with your team and understand the risks and potential benefits of any trial before agreeing to take part.

To find out more about trials at the Imperial Memory Unit, please go to the ‘Taking part in a memory trial’ page on our website. Alternatively, call the unit directly on 020 3313 5515.