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Get involved to help future generations

Did You Know…

There is no cure for Alzheimer’s disease, but there are many research studies actively enrolling participants to test new interventions, explore innovative diagnostic techniques, improve the quality of life of caregivers, and ultimately prevent the disease. Over 50,000 volunteers, both with and without Alzheimer’s disease or a related dementia are needed to participate in the more than 260 studies happening across the United States.  Recruiting and retaining participants for clinical studies is the largest barrier to advancing Alzheimer’s disease research, second only to funding.  To overcome this challenge, the Alzheimer’s Association has developed TrialMatch, a free tool that matches individuals to research studies in their area they may be qualified for. 

 

What is TrialMatch?

TrialMatch is a free matching service that connects individuals with dementia, caregivers, and healthy volunteers with local research studies.  When you sign up for TrialMatch, you’ll get a list of research studies to consider, like prevention, quality of life, diagnosis, and different types of treatments, both drug trials and lifestyle interventions.  TrialMatch is confidential and provides you with information on research studies, which means you control how you choose to help.   

Learn more about TrialMatch from the Alzheimer’s Association
Chief Science Officer, Dr. Maria Carrillo

Why Should I Participate in Research?

      • Access potential treatments before they are widely available
      • Receive expert medical care at knowledgeable medical facilities
      • Know that you have tried everything possible
      • Contribute to the cause of eliminating Alzheimer’s disease for future generations

How do I sign up for TrialMatch?

 TrialMatch is accessible online and by phone:

Visit alz.org/trialmatch 
or 
Call 800-272-3900

How to use TrialMatch

  • Create a TrialMatch account (online or by phone)
  • Complete a user profile by completing a brief questionnaire
  • Explore the studies with which you matched
  • If a study interests you, call or email the research study site using the contact information provided
  • The study site will most likely schedule a screening visit in person or over the phone
  • If the study is a good fit, then you can give consent to participate

How to Create a New TrialMatch Account
Watch this short video for step-by-step instructions on creating your TrialMatch account

How to Browse Your Matched Studies
Watch this short video for step-by-step instructions on how to view your matched studies in TrialMatch

How to Update Your TrialMatch Profile
Watch this short video for step-by-step instructions on how to update your profile to view new studies 

What should I expect if I participate in a reseach study?

Study visits can range in frequency.

Types of tests will vary based on the study, but might include brain imaging, memory tests, taking a medication, or a lifestyle intervention.

Studies are conducted in various places such as hospitals, universities, home visits, or even online with a computer.

Informed consent includes information that enables you to make an informed decision about participating in the study. Ultimately, you decide whether participating is right for you.

Frequently Asked Questions

About TrialMatch

Who can participate in TrialMatch?

TrialMatch helps connect healthy volunteers, caregivers, and people living with dementia

What types of studies are listed in TrialMatch?

TrialMatch sorts research studies into five different types:

  • Treatment trials test new treatments of combinations of treatments.
  • Diagnostic studies find new tests or procedures for diagnosing a disease or condition.
  • Prevention trials investigate ways to prevent the onset of diseases.
  • Quality of life studies explore ways to improve quality of life for individuals who have a chronic illness, their caregivers, and family members.
  • Online studies are web-based and conducted entirely online.
Can I create a profile in TrialMatch on behalf of my spouse/friend/parent/etc with Alzheimer’s?

Yes, you can create multiple profiles in the same account through TrialMatch including one on behalf of the person living with Alzheimer’s.

Will my contact information be shared with anyone?

No, your information in TrialMatch is confidential.  Even Alzheimer’s Association staff don’t have access to the database.

Will research studies contact me after I sign up with TrialMatch?

No, you will be responsible to contacting research studies you wish to participate in.  Their contact information will be provided through TrialMatch.

Will I have to get a drug?

Not necessarily.  TrialMatch categorizes the research studies based on type, like treatment (drug), diagnosis, quality of life, prevention, and even online studies.  So there are a variety of studies you can choose from that don’t include a drug.

Where is the study located?

There are studies located throughout Massachusetts/New Hampshire (and New England and the entire United States!).  TrialMatch will list the location of each site and the approximate distance from the zip code you provided.

How old do I have to be to participate?

Most of the studies right now look for individuals who are older than 65 years.  However, prevention research is becoming more common and those studies recruit younger individuals.  Some studies look at quality of life or are observational and may recruit younger individuals.  TrialMatch takes your age into account and will only match you with studies that you are eligible for based on your age.

I signed up for TrialMatch before. Should I sign up again?

Yes.  By signing up again, you will receive an email/phone call from TrialMatch reminding you of how to login.  If you encounter any issues, please call our Helpline at 1-800-272-3900 and press 1.

Can I still participate despite a particular medical condition?

Potentially.  Each study has different eligibilities and TrialMatch takes this into account when you complete your profile.

What happens after I complete the TrialMatch card at an event?

Your information will be entered into the TrialMatch database.  You will then receive an email (or phone call, based on preference) from TrialMatch prompting you to create an account and complete your profile.

What kinds of studies are available for caregivers?

Studies for caregivers often include quality of life studies, so looking at ways to reduce stress or evaluating resources available.

Can I participate even though I don’t have Alzheimer’s but instead have vascular dementia/FTD/etc?

Yes.  TrialMatch includes all studies related to dementia and will match you with studies looking for individuals with your diagnosis.

Will I have to travel to participate?

Potentially.  While most studies require you to visit the study site, some studies take place online or make a home visit.  You can ask the study site about travel before you participate.

Does signing up for TrialMatch mean I am signing up for a research study?

TrialMatch only matches you with studies and provides the information about the study to you.  It is then up to you to decide whether you want to contact the study site.

I signed up for TrialMatch a few years ago, participated in one study and then heard nothing?

You should periodically go into TrialMatch to view new studies and sign up for those you might be interested in.  Also, you can set your profile so you are alerted when new studies in your area of interest come up.

Will my personal information entered, such as current prescriptions and health related issues, be shared with anyone?

No, all the information you enter into TrialMatch is confidential.

About Clinical Trials

What is a clinical trial?
    • There is chance that you may get a placebo.  For any study that has a placebo group and a treatment group, researchers will assign either the treatment or placebo in a completely random fashion and will communicate what chance you have of being in each group.
    • Some studies have a “delayed start” design which means that every participant will get eventually get the treatment as part of the study, even if they first received the placebo.
    • Other studies that may implement an open-label extension study if it looks like the intervention might be effective. This means that even if you started on the placebo, you might have the option to receive the intervention as part of the study later on.
    • Before you decide to participate in a particular study, you can ask the study coordinator about the likelihood of receiving the placebo and whether there is the possibility of receiving the treatment as part of the study afterwards.
Why should I join a clinical trial?

Testing new methods and treatments greatly increases our understanding of Alzheimer’s disease and other dementias and enables the development of effective treatments and prevention strategies that will impact the generations to come.

How do we know clinical trials are safe?

Although each clinical trial has some degree of risk associated with it, every study in the United States follows strict regulatory guidelines set by the FDA. The FDA will monitor the study and evaluate the potential risks vs. benefits and has the ability to terminate the study if it is deemed unsafe.

What if I sign up for a trial and find the commitment is too much, can I just quit?

Study coordinators prefer that all participants who sign up for a trial complete it, but if there are circumstances that are prohibiting you from completing the trial or you are no longer comfortable with the research study, you are free to stop at any point.

Will the outcome of trials I participate in be shared with me?

It depends on the study.  We urge you to ask the study site up front whether they plan to share the results with you.

If I participate in a study, is it possible that I will find out that I am at high risk for developing Alzheimer’s disease? If so, is that information shared with me?

The answer to both questions is it depends.  Some studies will use pre-screening methods to determine whether you are at a higher risk of developing Alzheimer’s disease using a genetic test, conducting a spinal tap, or through imaging your brain. Other studies are just looking at how diet or exercise affect cognition and wouldn’t be testing your risk profile for developing the disease.  This is a good question to ask a study site before you participate.  As for whether they share this information with you also depends on the study site.  Some studies might, while others do not or do not until after you have completed the study to make sure you don’t inadvertently bias the results.  Again, this is a good question to ask before you participate.  It’s also important to note that being at risk for AD doesn’t mean you will develop the disease.  Since there is currently no preventative therapy, you would just be told to exercise and maintain a healthy diet – which is what you would be told even if you didn’t have a higher risk.

Will I receive an amyloid PET scan if I participate in a study?

Potentially.  Many studies conduct an amyloid beta PET scan as part of the study, but not all of them.  This is a good question to ask the study before you participate.

Is there a chance I will just receive a placebo and not the treatment?
    • There is chance that you may get a placebo.  For any study that has a placebo group and a treatment group, researchers will assign either the treatment or placebo in a completely random fashion and will communicate what chance you have of being in each group.
    • Some studies have a “delayed start” design which means that every participant will get eventually get the treatment as part of the study, even if they first received the placebo.
    • Other studies that may implement an open-label extension study if it looks like the intervention might be effective. This means that even if you started on the placebo, you might have the option to receive the intervention as part of the study later on.
    • Before you decide to participate in a particular study, you can ask the study coordinator about the likelihood of receiving the placebo and whether there is the possibility of receiving the treatment as part of the study afterwards.
What are the different phases of clinical trials?

alz.org/trialmatch
TrialMatch is a free tool developed by the Alzheimer’s Association that matches you to Alzheimer’s and other dementias research studies in your area. You can find all types of studies including treatment, diagnostic, prevention, quality of life, and even online studies..

Clinicaltrials.gov
A database of clinical studies happening all over the world for a variety of diseases, including Alzheimer’s and other dementias.

Can I register for a study after it has started?

Yes, studies will continue to enroll participants for a period of time after the study initially starts until they have reached the number of participants needed to test the intervention for safety and effectiveness.

Where can I find out more information about clinical trials happening near me?

alz.org/trialmatch
TrialMatch is a free tool developed by the Alzheimer’s Association that matches you to Alzheimer’s and other dementias research studies in your area. You can find all types of studies including treatment, diagnostic, prevention, quality of life, and even online studies.

Clinicaltrials.gov
A database of clinical studies happening all over the world for a variety of diseases, including Alzheimer’s and other dementias.

Additional Information

Are Alzheimer’s disease and dementia the same thing?

While they are both associated with each other, they are not the same thing. Dementia is actually not a disease, but a syndrome. It’s an overarching term that encompasses the symptoms of memory loss, cognitive impairment and reasoning. Alzheimer’s disease is the most common cause of dementia and refers to the actual brain changes that lead to the symptoms of dementia.

What are other common causes of dementia?
    • Vascular Dementia
      • A type of dementia caused by damage to the blood vessels that supply oxygen and nutrients to the brain. The symptoms are similar to that of Alzheimer’s disease.  It is the second most common form of dementia after Alzheimer’s disease.
    • Frontotemporal Disorders (FTD)
      • A type of dementia caused by damage to brain cells specifically in the frontal and temporal lobes of the brain. Symptoms include unusual behavior and emotions, difficulty communicating, and exercising basic motor functions.
    • Lewy Body Dementia (LBD)
      • This is when proteins called alpha-synuclein form deposits, called Lewy bodies, in the brain. Symptoms of this will start slowly, but steadily worsen over time. These Lewy bodies affect various different areas of the brain and can affect movement, cognitive ability and mood.
    • For more information, please visit alz.org/dementia/types-of-dementia
With two parents with Alzheimer’s disease, is it beneficial to get a genetic profile and how would I do that?

Research has shown that those who have a parent, brother, sister or child with Alzheimer’s are more likely to develop the disease, and the risk increases when there is more than one family member affected.  There is one gene that has been found to increase the risk of Alzheimer’s:

    • APOE-e4: This is the gene with the strongest impact on risk of developing Alzheimer’s disease. APOE-e4 is what we call a risk gene. Having a risk gene means that you have an increased chance of developing Alzheimer’s disease, but it is not a guarantee.  You can have the APOE-e4 gene and never develop Alzheimer’s disease, and not have the gene and still develop it.  

However, there are a few genes, referred to as deterministic genes, that do directly cause Alzheimer’s disease.  These deterministic genes that cause Alzheimer’s are extremely rare and are found in only a few hundred families worldwide and account for less than 5% of the cases of Alzheimer’s disease.

At this time, no definite prevention measures or interventions for Alzheimer’s disease, so regardless of your genetic profile, we still recommend a steady maintenance of diet, exercise, and social/cognitive engagement.  If you have any further questions on how you should specifically approach genetic testing or evaluating your risk, talk to your doctor or a genetic counselor.  You can also call the Alzheimer’s Association Helpline at 800-272-3900 or visit our website for further information

Can I receive an amyloid PET scan at my doctor’s office?

Technically, yes, since amyloid PET scans are FDA-approved for use in the clinic. But amyloid PET scans are not typically covered by Medicare or private insurance at this time. However, the Alzheimer’s Association is overseeing the Imaging Dementia: Evidence for Amyloid Scanning (IDEAS) study to determine its utility in clinically uncertain cases and how this knowledge impacts on cognitive outcomes.

Many research studies will use amyloid PET scans for screening purposes, typically at no cost to you through the study.

Are there tests that would be able to show whether I’m developing Alzheimer’s - when I’m asymptomatic - in my 50’s?

There is no single test that can prove someone will develop Alzheimer’s disease. However, there is growing evidence that indicates that people can reduce their risk of cognitive decline by adopting key lifestyle habits. For more information see 10 Ways to Love Your Brain.

Common Terminology

Amyloid Beta

An abnormal protein that forms plaques (clumps of protein) in the brain that disrupts brain cell signaling and causes brain cells to die.

Amyloid PET Scan

Positron Emission Tomography (PET) is a brain imaging technique that shows the amount of amyloid beta in the brain, a protein that is associated with Alzheimer’s disease.

Biomarker

Biomarkers, short for biological markers, is something that can be measured to accurately and reliably indicate the presence of disease.  For example, the presence of proteins like amyloid beta or tau, or signs of brain atrophy are biomarkers of Alzheimer’s disease.

Cohort

A cohort is a group of people defined by a set criterion in a clinical trial.

FDA

The FDA stands for the Food and Drug Administration, which is a United States federal regulatory agency that requires that drug companies adhere to safety protocols and due diligence in their clinical trials.

IRB

IRB stands for Institutional Review Board and it is a panel of individuals that ensure the rights of the trial subjects are protected, as well as the safety of a research study. Studies must go through this process before enrollment.

MRI

Magnetic Resonance Imaging (MRI) is a technique that doctors can use to take pictures of the brain and other areas of the body. MRI uses strong magnetic fields to image the brain. They are useful in identifying and locating the amount and location of atrophy, or brain loss.

Placebo

In a clinical trial, a placebo is a pill or other form of intervention that has no effect.  The placebo group consists of the individuals in the study who were given the placebo and will be compared to the intervention group, who received the actual intervention.  Placebos are important because they allow researchers to determine whether the intervention had any effect and make sure that any changes are due to the intervention and not a different factor.

Randomization

Randomization is the act of distributing placebo versus the intervention (like a medication) randomly to the participants to create a placebo group and treatment group in order to test the effectiveness of the intervention.  

Study Sponsor

A sponsor is the company or individual(s) that oversees the management of the clinical trial.

Tau

Tau is a protein that naturally occurs in brain cells to help maintain their structure.  In Alzheimer’s disease, however, tau has been found to twist into protein tangles that disrupts the brain cells.