A Primer on Clinical Trials

Clinical trials help scientists learn more about diseases and health care. Some trials look at the basic science behind a disease. Many trials test new medicines and treatments to see if they are safe and work well. Depending on the particular trial, by participating, you may have access to promising new treatments and receive care that meets high standards. However, it's important to recognize that many clinical trials also carry potential risks.

Joining a clinical trial helps scientists learn more about diseases, but it may involve unexpected side effects or require extra time and effort. It’s important to weigh both the potential benefits and the risks before deciding to participate.

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Participating in a clinical trial ensures that people like you—your family, your community—are represented. You have a chance to participate in research that could find a new treatment that may work for you or your loved one. Your participation is vital for ensuring that treatments work for everyone, especially across different genders, races, ethnicities, and socioeconomic backgrounds.

However, it’s important to remember that participating in a trial may also come with risks and uncertainties. For example, not all treatments are guaranteed to work or be free of side effects.

Historically, people of color have been underrepresented in clinical trials, leading to gaps in understanding how treatments work for diverse communities.⁴ When trial groups better reflect real-life demographics, scientists gain a clearer picture of how treatments impact all populations.

Your participation can help ensure that treatments work for everyone, including different genders, races, and backgrounds.

Federal law requires researchers to tell you about any known risks. Nearly every clinical trial for Alzheimer’s research in the U.S. must be approved by an Institutional Review Board (IRB) before it begins. Their job is to review the research specifically to protect the rights and welfare of the participants.

To find a legitimate clinical trial, make sure you are only working with trials listed at clinicaltrials.gov. Not all side effects of a treatment are known in advance. Researchers and the IRB do their best to make sure that they keep risks low.

All participation in a clinical trial is voluntary and confidential, so you can always stop at any point.^5,6 Your personal information will never be used for anything else.

Before you can join a trial, you'll probably go through a screening process. This means you'll have to meet the trial criteria (age, diagnosis, etc.) and you’ll go through some tests and assessments to see if you qualify for the trial. If you don't qualify for one trial, you might be able to join another. You can use resources like the Alzheimers.gov Clinical Trials Finder to search for trials in your area and check the eligibility criteria.²

While all trials are different, if you join a clinical trial here is what you might expect if your trial is to test a potential medication:

Types of trial groups: In a clinical trial, you will be placed in either an experimental or control (placebo) group. Both groups receive close monitoring.
Frequent Visits: You'll probably need to visit the doctor more often than you would for regular care. This can last for up to a year or more.
Regular Tests: To understand if the treatment is working, testing is done on a regular basis. These may include blood tests, MRIs, PET scans, and thinking or memory tests.
Study Partner: You might need a person who knows you well, like a family member or close friend, who can share with researchers how you are doing.

Each trial is different, but some benefits that you can expect if your trial is of a potential new medication include:^4,5,6

New Treatments: You might get to try new medicines or therapies that could help slow down the progression of Alzheimer's or help with a specific symptom of the disease. Note that most trials of potential new medicines also have a placebo group which does not receive the potential new medicine, but all participants contribute to scientific understanding.
Gain Support: Not only will the research team treat you with care and respect, but some trials will also provide support with transportation to and from the clinic. Some trials pay for travel expenses, and some offer participants a stipend or payment for participation . Translation and service resources might also be available if needed.

Each trial is different, and comes with risks you should consider^5,6:

Side Effects: There may be unknown side effects to a treatment. It’s important to ask questions about possible side effects when you are deciding if you want to participate in a trial.
Trial Ending Early: Sometimes trials end early because the treatment isn't working or because it's found to not be safe enough.
Placebo: In many trials of new medicines, participants may receive a placebo (an inactive treatment) instead of the actual treatment. To ensure fair and unbiased results, neither you nor the research staff will know whether you are receiving the placebo or the real treatment. If the treatment is found to be safe and effective, some trials may offer it to participants who were in the placebo group after the trial concludes. Regardless of the group you are placed in during a clinical trial, you will receive the same high standard of care to ensure your health and safety.

Learn More: Research clinical trials on trusted sites like clinicaltrials.gov
Ask Questions: Understand the potential benefits, risks, and eligibility requirements before enrolling.
Take Action: Join a trial to access new treatments, receive high-quality care, and represent your community in advancing Alzheimer’s research.
Help your community today and make a lasting impact of the future of care and equity in healthcare by participating in a clinical trial!

However, it’s important to remember that participating in a trial may also come with risks and uncertainties. For example, not all treatments are guaranteed to work or be free of side effects.

Your participation can help ensure that treatments work for everyone, including different genders, races, and backgrounds.

All participation in a clinical trial is voluntary and confidential, so you can always stop at any point.^5,6 Your personal information will never be used for anything else.

While all trials are different, if you join a clinical trial here is what you might expect if your trial is to test a potential medication:

Types of trial groups: In a clinical trial, you will be placed in either an experimental or control (placebo) group. Both groups receive close monitoring.
Frequent Visits: You'll probably need to visit the doctor more often than you would for regular care. This can last for up to a year or more.
Regular Tests: To understand if the treatment is working, testing is done on a regular basis. These may include blood tests, MRIs, PET scans, and thinking or memory tests.
Study Partner: You might need a person who knows you well, like a family member or close friend, who can share with researchers how you are doing.

Each trial is different, but some benefits that you can expect if your trial is of a potential new medication include:^4,5,6

New Treatments: You might get to try new medicines or therapies that could help slow down the progression of Alzheimer's or help with a specific symptom of the disease. Note that most trials of potential new medicines also have a placebo group which does not receive the potential new medicine, but all participants contribute to scientific understanding.
Gain Support: Not only will the research team treat you with care and respect, but some trials will also provide support with transportation to and from the clinic. Some trials pay for travel expenses, and some offer participants a stipend or payment for participation . Translation and service resources might also be available if needed.

Each trial is different, and comes with risks you should consider^5,6:

Side Effects: There may be unknown side effects to a treatment. It’s important to ask questions about possible side effects when you are deciding if you want to participate in a trial.
Trial Ending Early: Sometimes trials end early because the treatment isn't working or because it's found to not be safe enough.
Placebo: In many trials of new medicines, participants may receive a placebo (an inactive treatment) instead of the actual treatment. To ensure fair and unbiased results, neither you nor the research staff will know whether you are receiving the placebo or the real treatment. If the treatment is found to be safe and effective, some trials may offer it to participants who were in the placebo group after the trial concludes. Regardless of the group you are placed in during a clinical trial, you will receive the same high standard of care to ensure your health and safety.

Learn More: Research clinical trials on trusted sites like clinicaltrials.gov
Ask Questions: Understand the potential benefits, risks, and eligibility requirements before enrolling.
Take Action: Join a trial to access new treatments, receive high-quality care, and represent your community in advancing Alzheimer’s research.
Help your community today and make a lasting impact of the future of care and equity in healthcare by participating in a clinical trial!

Living with Alzheimer's Disease

Clinical Trials in Alzheimer’s Disease and Related Disorders

You Can Take Action

Clinical Trials are Important.

Safety is the Top Priority.

There is a Screening Process.

What to Expect in a Trial.

There are Benefits to Joining a Trial.

There are also Risks to Joining a Trial.

Next Steps: How to Get Involved.