What is this study about?
Despite recent advances in understanding the biology of LBD and other causes of dementia, too little is known about how cognitive impairment develops in the brains of younger people and in people from historically underrepresented communities. If you are between the ages of 40 and 64, and have experienced recent changes in your thinking skills, language ability, or behavior, the BEYONDD study might be a good fit for you. To make the study more accessible to all, most testing is done online and in the comfort of your own home. On-site visits are optional, but encouraged, and some travel expenses can be reimbursed. In addition, individual test results will be returned to all study participants who would like them, explained by a healthcare professional.
What’s involved?
Participants in this study will first be asked to complete an online screener, which will determine if BEYONDD is a good fit for you. Participants will then be asked to complete online questionnaires and surveys, as well as a blood draw and tablet-based tests of thinking and memory that will be completed at the participant’s home or a location of their choosing. Participants will also be offered the opportunity to participate at a BEYONDD clinical site; this on-site visit includes an MRI and clinical evaluation. Participation may take up to one year and participants will have the option to learn their results at the end of the study in a one-on-one session with one of BEYONDD’s expert team members. As a thank you for your time, participants will receive small compensation for completing online, at-home and on-site study visits.
Who can participate?
BEYONDD, focusing on early onset dementia (EOD) in diverse populations, invites participation from individuals who identify as Black/ African American, Hispanic/Latinx, Asian, Hawaiian Native/Pacific Islander, and American Indian/Native Alaskan adults aged 40-64 years with recent (within the past 5 years) cognitive and/or behavioral impairments.
People can participate in this study from anywhere within the continental United States and Puerto Rico. Most assessments can be carried out online in the comfort of your own home. In addition, on-site visits are optional, though encouraged, and some travel expenses can be reimbursed.
| State | City | Study Site Name | Study Coordinator | |
| California | San Francisco | UC San Francisco | Brandon Palacios | Brandon.Palacios@ucsf.edu |
| New York | New York | Icahn School of Medicine Mt. Sinai | Omobolanle (Bola) Ayo | omobolanle.ayo@mssm.edu |
| Texas | San Antonio | UT HSC at San Antonio | Crystal Mendoza | mendozac2@uthscsa.edu |
More sites will be added during 2024.
Study Sponsor
This study is funded by the NIA.
For more information
Please call our BEYONDD team at 1-866-7MYMIND (1-866-769-6463) if you have questions.
You can learn more and sign up for the study on our website: beyonddproject.org