Clinical Trials: Myths vs. Facts

Myth: There are already plenty of volunteers. They don't need me to participate.
Fact: New treatments for Alzheimer’s disease are nearly impossible without clinical trials, and many more participants — including people with dementia or those who are at risk of developing it, caregivers and healthy volunteers with no dementia issues — are urgently needed. Hundreds of clinical studies are now recruiting participants.

Myth: It's too late — the disease is too advanced to participate in a research study.
Fact: There are clinical studies that work with people in every stage of Alzheimer's. Participating in a trial could have a potentially measurable impact on the disease.

Myth: Clinical trials are dangerous because they use new and unproven methods and medications.
Fact: Clinical trials are experiments and, as a result, always involve some level of risk. However, the ethical and legal codes that govern medical practice also apply to clinical trials. In addition, most large clinical trials are federally regulated with built-in safeguards to protect participants. However, there may be unpleasant, serious or even life-threatening side effects to experimental treatment. Participants should discuss and understand any side effects with their doctor, and if necessary, may withdraw at any time.

Myth: If I join a clinical trial, I won't receive the same quality of care that I currently have with my doctor.
Fact: Participants in clinical trials receive a high standard of care. All participants have the opportunity to talk with study staff, and should also continue care with their doctors.

For people living with the disease, research shows that those involved in clinical studies do somewhat better than people in a similar stage of their disease who are not enrolled, regardless of whether the experimental treatment works. This may result from the general high quality of care provided during clinical studies.

Myth: If I join a treatment clinical trial, I will get a placebo.
Fact: In a randomized clinical trial, it is often the case that some of the participants get a placebo as part of the trial design. Each potential participant should consider his or her comfort level in not knowing whether they will receive the experimental treatment or a placebo before deciding to join a trial.

Myth: There may be painful or invasive procedures as part of the clinical trial.
Fact: Each potential clinical trial participant should inquire about the trial design and the potential treatments and procedures they may receive during the study before deciding whether to join a trial. Volunteers can withdraw from a study at any time they or their physician feels it is in their best interest.

In addition, there are many studies that do not use experimental medications. You can find a clinical study that is right for you at Alzheimer’s Association TrialMatch®.

Myth: It costs too much to participate in a clinical trial.
Fact: Every clinical trial is different. Some clinical trials reimburse associated travel costs, and some may provide compensation to participants. Still, there may be costs associated with participating, so contact your trial site for information pertaining to a particular trial of interest.

Myth: I am going to be rejected from a clinical trial because I have another disease or condition.
Fact: Some people living with Alzheimer's disease also have other chronic medical conditions, such as heart disease, diabetes or cancer. However, they may still qualify for a clinical trial. Each clinical study has different inclusion and exclusion criteria. Check with the trial site or TrialMatch for more details.

Myth: If there is a clinical trial that could help me, my doctor will tell me about it.
Fact: With hundreds of clinical studies being conducted across the country and online, your physician may be unaware of which studies are in your area. For the most up-to-date information about these studies, use TrialMatch.

Myth: If a clinical trial ends early, my participation wasn’t meaningful.
Fact: All clinical studies — even unsuccessful ones — help scientists learn. Everything we know about current and potential Alzheimer’s treatments has come from clinical trials, including those that didn’t meet their intended outcomes.