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FAQ

Frequently Asked Questions

FAQ

Who can participate in TrialMatch?

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

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?

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?

We will send the cards to our Home Office who will input your information 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 vascular dementia/FTD/etc instead?

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 including say current prescriptions and health related issues be shared with anyone?

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

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.