Alzheimer’s Disease, Clinical Trials, and You

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by Ray Burow |

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The Alzheimer’s Association cites recruitment for clinical trials, and then retaining those recruits, as one of the greatest obstacles to Alzheimer’s research. Without participants, it is very difficult to find effective treatments. The lack of willing participants is second only to funding for Alzheimer’s research.

Clinical studies are key. Without them, we wouldn’t have the advancements that medical science has made in the development of drugs that are effective in slowing the progression of the disease or have enough information to form a diagnosis.

Clinical trials also help research scientists discover how to assist in the prevention of disease and take steps to ward off illness. This is true for all diseases, as we’ve most recently seen with COVID-19 and the rapid development of effective vaccines. Thankfully, people were willing to engage in clinical trials, and in part, this is why thousands of people are being vaccinated against the virus today.

Willingness to engage

Clinical trials, as they relate to Alzheimer’s research, need willing participants to engage. This includes healthy individuals as well as people who’ve previously been diagnosed with dementia. At times, a clinical trial will also include caregivers. We all desperately want researchers to find a cure for Alzheimer’s disease, but the hard fact is, without human participation in clinical trials, there won’t be one.

The Alzheimer’s Association is the largest nonprofit organization that funds research, and not only in the United States. It leads the world in support, research, and care, but the organization will not find a cure for Alzheimer’s disease without clinical trials, and volunteers are desperately needed.

Without clinical volunteers and participants, the Alzheimer’s Association won’t fully accomplish its ongoing mission to “end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.” It’s up to us as much as it is the organization.

What can you do?

There must be a reason why people are reticent to volunteer for clinical trials in Alzheimer’s disease. I don’t have proof, but I imagine for most people, fear tops the list of reasons.

As a caregiver, I can identify with that. Caregivers have a front-row seat to watch the damaging effects that Alzheimer’s disease has on their loved ones. We’re fearful of following the same path. Fearful of learning that we could also be at risk, we choose to monitor our own cognitive health and hope for the best, rather than risk facing an unwelcome diagnosis.

Caregivers might also be resistant to jumping into a clinical trial because of the associated risks. With every trial, there are risks involved. However, at some point, we have to realize that it’s not enough to wish, hope for, or demand a cure. We can become part of the process and jump into the fray.

The choice to participate

Deciding to participate in a clinical trial is very personal. It also is dependent upon your situation as a caregiver or as someone who’s been diagnosed with Alzheimer’s disease. As it’s an important decision and a noble one, it’s also crucial that you don’t make the decision lightly. Involve your healthcare provider in the decision as you weigh the risks associated with the clinical trial in which you plan to participate.

There may be medications involved with the trial. It is important to note with your doctor if those medications will interfere with the meds you’re currently taking. Don’t forget to include vitamins in your discussion.

Before deciding to take part in a clinical trial, weigh the benefits against personal risks. Choosing to go forward with the trial could prove beneficial, and not only in view of a cure. There are lessons to learn and apply that could have positive ongoing results for the volunteer.

Rigorous process

It may ease your mind to know that medications go through a rigorous process before they’re presented to clinical trials for human testing. Only five in 5,000 investigational drugs pass muster to reach the clinical trial phase. In some cases, the U.S. Food and Drug Administration has already approved the drug for another disease, and the clinical trial is testing it for a different condition.

Find a clinical trial

The Alzheimer’s Association has a wonderful tool to help you locate a clinical trial that’s just right for you or your loved one with Alzheimer’s disease. TrialMatch allows you to search in the privacy of your home and connects volunteers with clinical studies or trials that are currently recruiting.

Some studies may have been placed on hold during the COVID-19 pandemic, but check back often for updates. You can make contact via email at [email protected] or call 800-272-3900 to learn more.

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Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.

Comments

David VanLandingham avatar

David VanLandingham

There are a growing number of Preclinical Alzheimer's patients who are looking for trials but are locked out because they do not have a "Clinical Diagnosis". These people have amyloid plaque buildup, many are APOE 4, many could prove cognitive decline, then add their partner's testimony of symptoms. I am no neurologist but isn't that combination a rather convincing indicator of Alzheimer's? And, if not sufficient for the diagnosticians, if these people are willing to take a chance on a trial because they are pretty sure they have Alzheimer's, and, if you will be primarily testing for a decrease or elimination of cognitive decline, isn't it a win-win for both parties to include these people in these trials?

Science is working on several promising tests for Preclinical Alzheimer's, such as lumbar punctures, and blood tests. So what happens when we can inexpensively identify the Preclinical? Nothing! We identify them now with Pet Scans and then exclude from both treatment and trials!

All the science indicates early intervention us the best hope for a cure, so why don't we start thinking outside the box and start including known Preclinical right along with the MCI and AD!

A partial solution to the shortage of recruits is to include my wife and others like her in trials.

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