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What is Dementia?

It is an ‘umbrella term’ used to describe the changes in brain function that interfere with day-to-day life. Changes may occur in memory and thinking activities as well as behavior and personality. Some common causes of dementia are Frontotemporal dementia, Parkinson’s disease, Vascular dementia, and Alzheimer’s disease.

What is Early Onset Dementia?

Early Onset Dementia is when dementia symptoms happen before age 65.

About the BEYONDD Project

What is the BEYONDD Study?

The Biomarker Evaluation in Young Onset Dementia from Diverse Populations (BEYONDD) Project is a study aiming to make early onset dementia research more diverse and inclusive.

The BEYONDD study doesn’t test new treatments; instead, it’s an observational study that aims to discover new ways to identify signs of memory and thinking decline. Our goal is to advance Early Onset Dementia research by making it more inclusive and accessible.

How is the research conducted?

BEYONDD researchers use a combination of online questionnaires and digital tests to measure your memory and thinking abilities. The project also includes an at-home blood draw and optional in-person visits at a clinical site to better understand your brain health.

Who is involved in the study?

BEYONDD is made up of a diverse team of doctors, scientists, and analysts. We are funded by NIH and supported by the following organizations: Alzheimer’s Association, FTD Disorders Registry, AFTD, Lewy Body Disease Association.

Who can join? Is this study right for me?

Our research is focused on diverse populations, which is why we are looking for Latinx/Hispanic, Black/African American, Asian/Asian American, and Pacific Islander volunteers between the ages of 40 and 64 who are concerned about their thinking, language, behavior, or memory.

What to Expect if I Decide to Participate

What does participating involve?

Participating involves taking online surveys and digital memory and thinking tests. We’ll also conduct regular at-home blood work to better understand your overall health. Additionally, specialized blood tests will be performed to check the protein levels linked to brain health. All these tests will be done from your own home and you’ll also have the option to get your test results.

If you are interested in coming to one of our expert centers, our team can help coordinate a visit to a BEYONDD site for more in-depth tests of thinking and memory and an MRI scan to take pictures of your brain.

Where can I participate?

You can participate in the BEYONDD project from the comfort of your home and you can also choose from one of our study sites for an on-site visit:Study Sites:

University of California, San Francisco
Mt. Sinai Medical Center, New York
Mount Sinai School of Medicine
University of California, San Francisco
University of Texas, Health Science Center at San Antonio
University of Michigan
Georgetown University

Will I get my test results?

Yes. After completing at-home and on-site visits, you will have the option to access your test results along with one-on-one sessions with a physician, and feedback from the neuropsychology team.

What if I decide I don’t want to participate anymore?

>You can withdraw from this study at any time. You can do so online through your BEYONDD account or by contacting our BEYONDD team at 1-866-7MY-MIND.

How much time does it take to participate?

Each BEYONDD visit may take different amounts of time.

  1. The online screening process takes only a couple of minutes to register and learn if BEYONDD is a good fit for you.
  2. The online questionnaires and surveys can take an hour and a half, but you don’t have to do them all at once. You’re more than welcome to take breaks and we’ll even send you reminders to pick up where you left off.
  3. The at-home blood draw and tablet-based thinking and memory tests will take about one hour. You can choose to have this appointment at your home or another convenient location.
  4. The on-site visit can take up to eight hours in total – we’ll work with you on scheduling this and can split it up across a couple of days if needed.
  5. The results disclosure visit, a one-on-one session with an expert team member where we share your results with you, can take up to one and a half hours.

How long does my participation last?

Your participation may last up to 9 months. It can take less time if you choose to only participate in the remote portions of the project.

Do I get paid for participating?

Yes, and so will your study partner if you want a friend or family member to join you in this project.

  1. For completing the online questionnaires and surveys, you will receive $20. Your study partner will also receive $20 for completing their own set of questionnaires.
  2. For completing the blood draw visit, you will receive $100.
  3. If you choose to come for an in-person visit at one of our sites, you’ll receive $200 and your study partner will receive $50 if they choose to accompany you on this visit. Your travel expenses may be reimbursed up to $1000.
  4. Lastly for participating in a “return of results” visit, you’ll receive $100.

Do I get a copy of my signed consent form?

Why should I participate?

Participation is not only valuable to your health, but it also contributes to speeding up the diagnosis process of Early Onset dementia.

What are the risks of participating?

Some potential risks of participating in the BEYONDD Project are:

  • Worry, fear, anger
  • Protecting your private information from being shared without permission
  • Possible negative responses from loved ones or community members
  • Discrimination related to long-term planning, medical care, or the law

Your Information and Privacy

What is your privacy policy?

The BEYONDD Project is a federally-funded research study with strict guidelines set by an Institutional Review Board (IRB) to secure the privacy of your information.To learn more about our privacy policy, please visit our privacy policy page.

Technical Difficulties

I am having trouble logging in. What should I do?

If you are experiencing technical difficulties please call us at 866-7MYMIND (866-769-6463) and a member of our study staff will be able to assist you.

Participation in Additional Research

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