Is an Alzheimer's clinical trial right for you?
Understanding Alzheimer's research
Personal fit and eligibility
Protecting your brain
Protecting your brain
Enrolling in a clinical trial
What are clinical trials?
Clinical trials are research studies that test new ways to prevent, diagnose, or treat disease. In dementia research, clinical trials are how scientists learn what works — and what doesn’t.
Lifestyle trials
Diagnostic trials
Intervention trials
Prevention trials
Return
Next
The 3 phases of drug trials
Purpose
Volunteers
Duration
Phase 1
Phase 2
Phase 3
Test for safety and side effects; determining the right dose
Confirm effectiveness and compare to current treatments
Test for effectiveness; further evaluate safety
~20–80
~100–300
~300–3,000
from months to 2 years
multiple years
up to 1 year
Some drugs get accelerated approval — meaning they can reach the public while Phase 3 is still ongoing.
Return
Next
Should you participate in a trial?
Before joining a trial, consider:
Eligibility
Time commitment
Risks
Read about ARIA risks: What You Should Know About Brain Bleeds in Trials
Cost & compensation
Should you enroll in a trial? 6 Things You Should Know
Return
Next
Real stories from trial participants
Dewayne Nash
Participating in research gave him hope. But he wishes they had waited to approve the drug until more research was done.
Kim Reid
Adverse effects forced her to halt participation in a clinical trial.
Kim Rei
Andres Martin
How the Jalisco gene, a rare genetic mutation, led to enrollment in a trial.
Andres Martin
Return
Next
Potential benefits
People who join dementia trials often say they feel empowered. Here's why:
Advancing science
Access to treatments
Taking control
Monitoring
Return
Next
Diversity in clinical trials
Too often, clinical trial participants don’t reflect the communities most impacted by dementia. Latin Americans, Black Americans, and Indigenous communities are underrepresented in dementia research.
“Diversity is important to make sure that the diagnostic tools that we use, the treatments we develop, are efficacious for all.”
Dr. Monica Parker, Emory ADRC
Read more
“We’ve already spent maybe billions of dollars in the last four decades [on diversifying trials], and yet less than 5 percent of these trials include underrepresented groups like Latinos and African Americans. That’s a travesty.”
María Aranda, USC
Read more
Return
Next
Diversity in clinical trials
Doctors use multiple tools to get a full picture of cognitive decline and make an accurate diagnosis.
“We also employ things like building trust and understanding cultural competencies. If you got to go in and talk to some African Americans, make sure that people that are going in and talking are also African American, or they’re not going to listen. With any culture, I think it’s important. I think respect, as I mentioned, trust, and also, you ask yourself the question, or they’re asking, “Do you care about me?” “Are you here because of research and the grants that you’re making the money?” “Or do you care about me? And the community and the people of color?” If you can answer that question, then you have it.”
Ralph RichardsIndiana Alzheimer's Research Center advisory board
Read more
Return
Next
How to get involved?
- Ask your doctor if any local trials are recruiting.
- Sign up for Being Patient’s Trials Update Newsletter for alerts about studies near you.
- Join a support group — word-of-mouth is powerful.
Return
Next
Want to learn more?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
Prevention Trials
Prevention trials are long-term observation trials that seek to understand how dementia might be preventable.
Lifestyle Trials
Lifestyle trials examine how factors like diet, exercise, sleep, education and social interaction can influence dementia risk.
Intervention Trials
Intervention trials evaluate possible treatments for Alzheimer's. Some of these therapies treat symptoms. Others are being designed to actually treat diseases like Alzheimer’s on a pathology level.
“A lot of the hispanic population [that] carry this mutation live paycheck to paycheck or are here illegally, which causes barriers to participating in medical trials or seeing a doctor. These people have to take days off work to be seen by doctors, and they may not be able to afford that.”
READ MORE
“I couldn’t think... It was like your mind was lost...” - Kim Reid “She has done clinical trials before. Unfortunately she had a bad experience with one of the clinical trials that she had. With that experience, we’ve stepped back [for] a minute from clinical trials. But at the same time we were just offered another one last week that we’re looking into and considering… we have to do that now because of her adverse reaction to the first clinical trial. We were close to the end, probably about a month away from the last infusion, and she started having some side effects.” - Robert Reid, Kim’s husband and caregiver
READ MORE
Diagnostic Trials
Diagnostic trials test different ways to diagnose dementia. For example, blood tests that can detect Alzheimer’s biomarkers are new to the market, and some are being tested now in clinical trials.
“It gave me access to a drug that may slow the disease down. I’ve been able to access [the drug] five, six years before others have been able to. One thing this drug had given us was some hope.”
READ MORE
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Transcript
Is an Alzheimer's clinical trial right for you?
Understanding Alzheimer's research
Personal fit and eligibility
Protecting your brain
Protecting your brain
Enrolling in a clinical trial
What are clinical trials?
Clinical trials are research studies that test new ways to prevent, diagnose, or treat disease. In dementia research, clinical trials are how scientists learn what works — and what doesn’t.
Lifestyle trials
Diagnostic trials
Intervention trials
Prevention trials
Return
Next
The 3 phases of drug trials
Purpose
Volunteers
Duration
Phase 1
Phase 2
Phase 3
Test for safety and side effects; determining the right dose
Confirm effectiveness and compare to current treatments
Test for effectiveness; further evaluate safety
~20–80
~100–300
~300–3,000
from months to 2 years
multiple years
up to 1 year
Some drugs get accelerated approval — meaning they can reach the public while Phase 3 is still ongoing.
Return
Next
Should you participate in a trial?
Before joining a trial, consider:
Eligibility
Time commitment
Risks
Read about ARIA risks: What You Should Know About Brain Bleeds in Trials
Cost & compensation
Should you enroll in a trial? 6 Things You Should Know
Return
Next
Real stories from trial participants
Dewayne Nash
Participating in research gave him hope. But he wishes they had waited to approve the drug until more research was done.
Kim Reid
Adverse effects forced her to halt participation in a clinical trial.
Kim Rei
Andres Martin
How the Jalisco gene, a rare genetic mutation, led to enrollment in a trial.
Andres Martin
Return
Next
Potential benefits
People who join dementia trials often say they feel empowered. Here's why:
Advancing science
Access to treatments
Taking control
Monitoring
Return
Next
Diversity in clinical trials
Too often, clinical trial participants don’t reflect the communities most impacted by dementia. Latin Americans, Black Americans, and Indigenous communities are underrepresented in dementia research.
“Diversity is important to make sure that the diagnostic tools that we use, the treatments we develop, are efficacious for all.”
Dr. Monica Parker, Emory ADRC
Read more
“We’ve already spent maybe billions of dollars in the last four decades [on diversifying trials], and yet less than 5 percent of these trials include underrepresented groups like Latinos and African Americans. That’s a travesty.”
María Aranda, USC
Read more
Return
Next
Diversity in clinical trials
Doctors use multiple tools to get a full picture of cognitive decline and make an accurate diagnosis.
“We also employ things like building trust and understanding cultural competencies. If you got to go in and talk to some African Americans, make sure that people that are going in and talking are also African American, or they’re not going to listen. With any culture, I think it’s important. I think respect, as I mentioned, trust, and also, you ask yourself the question, or they’re asking, “Do you care about me?” “Are you here because of research and the grants that you’re making the money?” “Or do you care about me? And the community and the people of color?” If you can answer that question, then you have it.”
Ralph RichardsIndiana Alzheimer's Research Center advisory board
Read more
Return
Next
How to get involved?
Return
Next
Want to learn more?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
Prevention Trials
Prevention trials are long-term observation trials that seek to understand how dementia might be preventable.
Lifestyle Trials
Lifestyle trials examine how factors like diet, exercise, sleep, education and social interaction can influence dementia risk.
Intervention Trials
Intervention trials evaluate possible treatments for Alzheimer's. Some of these therapies treat symptoms. Others are being designed to actually treat diseases like Alzheimer’s on a pathology level.
“A lot of the hispanic population [that] carry this mutation live paycheck to paycheck or are here illegally, which causes barriers to participating in medical trials or seeing a doctor. These people have to take days off work to be seen by doctors, and they may not be able to afford that.”
READ MORE
“I couldn’t think... It was like your mind was lost...” - Kim Reid “She has done clinical trials before. Unfortunately she had a bad experience with one of the clinical trials that she had. With that experience, we’ve stepped back [for] a minute from clinical trials. But at the same time we were just offered another one last week that we’re looking into and considering… we have to do that now because of her adverse reaction to the first clinical trial. We were close to the end, probably about a month away from the last infusion, and she started having some side effects.” - Robert Reid, Kim’s husband and caregiver
READ MORE
Diagnostic Trials
Diagnostic trials test different ways to diagnose dementia. For example, blood tests that can detect Alzheimer’s biomarkers are new to the market, and some are being tested now in clinical trials.
“It gave me access to a drug that may slow the disease down. I’ve been able to access [the drug] five, six years before others have been able to. One thing this drug had given us was some hope.”
READ MORE