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The personal side of participating in a clinical research trial for Alzheimer’s Disease

One local resident speaks candidly about his experiences as part of a research trial with True North Clinical Research in Halifax
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True North Clinical Research, now known as Centricity Research, is a Nova Scotia-based research and memory facility that works towards finding new treatments for individuals who are living with Alzheimer’s disease or mild cognitive impairment. They offer free memory clinics as well as the opportunity for qualified patients to participate in clinical research trials.

I was able to have a conversation with one of True North’s current study participants, who I will refer to as Tom in order to preserve his privacy, to find out more about what his experiences have been like so far.

Tom, who is in his 70s, was first a patient at True North’s Memory Clinic in 2020 and is now a part of a research trial that aims to test the effectiveness of a medication related to memory loss. Tom is retired and enjoys a wide variety of physical activities including marathon running, cross country skiing, and sailing. He also loves woodworking, fixing machinery, and doing home repairs.

How did you find out about True North Clinical Research?

“I was complaining about my memory, so my wife searched online for memory clinics in Halifax and found True North. She called to see if they offered memory testing, which they do, so she scheduled an appointment for me.”

Why did you decide to participate in a research study?

“There is a strong history of Alzheimer’s disease in my family. My dad died with the disease and I have always been fearful of developing it myself. I thought that the treatment that was offered to me through the study may delay the progression of my disease.”

How do your family and friends feel about you participating in the research study?

“At this point, we have only told our children. Given the stigma associated with Alzheimer’s disease and dementia, I have decided to wait to let others know about my situation. My children have been very supportive and two of them have been able to come with me when I’ve had my treatment. The staff at True North Clinical Research were very welcoming and open to answering my children’s questions.”

What has your experience in the research study been like so far?

So far, I have had a very positive experience. The staff and Dr. W. always check in with me and seem genuinely interested in how I am doing. They are all very professional and knowledgeable.

The clinic’s physical location in Halifax is very convenient for me. It is close to where I live and easily accessible.”

What are the most challenging parts of participating in the study?

“The time commitment, which is approximately three hours every two weeks, may possibly become a challenge in the future. Right now, because of COVID, we aren’t travelling much but we will want to drive across Canada to visit our daughter eventually.

Since it is a blind trial, I do not know if I am receiving a placebo or the real medication. I find this challenging. Some days I think that my memory is a bit better and other days I think it is getting worse. It can be disheartening.

I also find the memory tests to be a challenge, partly because something that should be so easy can be surprisingly difficult. The days that I do the memory tests are not my favourite.”

It is estimated that over 500,000 Canadians are currently living with some form of dementia, including Alzheimer’s disease. Through studies like the one that Tom is participating in, True North Clinical Research is able to help researchers discover treatments that have the potential to improve many lives here in Canada and around the world. At any given time, True North has a variety of clinical studies. Some are looking for volunteers with mild cognitive impairment, while others are seeking volunteers with an actual diagnosis of Alzheimer’s disease. Each study is different and has different requirements to become involved.

To find out more about the work that True North Clinical Research does or to schedule a free memory test, call 1-855-378-8783 or visit their website. True North has clinics in both New Minas and in Halifax.

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