Question: Why should I be a guinea pig for a clinical trial?
Answer: There are a lot of good reasons! With over 5,000 researchers from around the world presenting the latest advances on the diagnosis and treatment of Alzheimer’s Disease and other dementias at the recent Alzheimer’s Association International Conference in Toronto, this is a great time to think about this question.
Let’s start by admitting that I won’t try to convince you to participate in a clinical trial “for the greater good.” It’s true that we still know far too little about this illness, we have very few tools for accurate diagnosis, and we have little in the way of effective treatments. And so, research must be undertaken if we are to improve the health of patients with dementia. In spite of this, I encourage potential study participants and their caregivers to legitimately ask “what’s in it for me?”
One potential benefit is the ability to be exposed to new treatments. The current medications to treat Alzheimer’s disease are only modestly effective at best, and so there is intense study of new drugs with different mechanisms that might be more effective. The good news about these trials is that most of them require patients to already be taking the standard drugs to treat Alzheimer’s disease, and so patients don’t have to be completely “untreated” to go into these trials. However — to be perfectly honest — the drug trials that patients are participating in today may not lead to a medication that is readily available for several years, even if all the trials are spectacularly positive.
My most powerful argument to convince patients and their families, is that participants in clinical trials do better overall than other patients — even if they end up being treated with placebo. Why is that? One scientific reason for this is something called the “Hawthorne Effect”- the act of being formally observed in clinical trials changes the behaviour of the participant. It’s hard to imagine how something like this could improve outcomes in patients with Alzheimer’s disease, but being in a clinical trial actually provides a large number of powerful psychological and social interventions.
One cannot underestimate the power that comes from the “installation of hope” that accompanies participation in a trial. This brightens the spirit of caregivers, and ultimately reflects on the mood of the patient. Patients in clinical trials typically spend a significant portion of time at the clinic meeting with nurses, research assistants, doctors, being tested and examined – all of which are mentally stimulating activities. The caregiver will also meet with research assistants and/or social workers who help monitor their level of burden and stress. In many of our trials, we also provide caregivers with specific caregiver education and support sessions during the study. All of this stimulation and support provides patients and their families with an enriched environment that likely has direct benefits.
But probably the most important benefit participants in clinical trials receive is the extra medical care and attention that are an integral part of all clinical trials. Most trials require a detailed baseline medical exam which includes physical exams, laboratory tests, brain scans, cognitive testing and specialized exams to determine appropriateness for the trial. While in the study, there are ongoing examinations to ensure not only effectiveness, but also the safety of the drug or intervention. This intensive level of medical observation ensures optimal care and safety. In my own experience running clinical trials, I have diagnosed diverse medical problems such as Parkinson’s Disease, new strokes, infections, high blood pressure, and diabetes, that were previously unrecognized in these patients and subsequently treated simply because they entered into a clinical trial.
Whether your goal is to advance science, get a chance to try new and novel medications, or simply to experience clinical care at its best, think about a clinical trial. I also highly recommend discussing the idea of research with your spouse/family/caregiver/power of attorney as early as possible to ensure they know how you feel about participating in research, so that this is an option that is available to you even as the disease progresses.
