FAQ

The New Jersey Down Syndrome Aging Study is a research study focused on aging and Alzheimer’s disease in adults with Down syndrome. Down syndrome is genetically linked to Alzheimer’s disease, but not all individuals with Down syndrome will develop dementia. The goal of this study is to understand why some adults develop dementia while others do not, and to identify early signs of Alzheimer’s disease using safe, noninvasive tests that are sensitive to within-person change and designed to minimize bias related to culture and diversity. These findings may help guide future treatments and early interventions.

There have been few studies on dementia and Down syndrome in New Jersey. This study is one of the first in the state to focus specifically on aging, dementia, and Down syndrome, despite strong interest among individuals with Down syndrome and their families in participating in clinical research.

There have been few studies on dementia and Down syndrome in New Jersey. This study is one of the first in the state to focus specifically on aging, dementia, and Down syndrome, despite strong interest among individuals with Down syndrome and their families in participating in clinical research.

The study aims to identify simple, accessible markers of disease that can be used across diverse populations. We seek to better understand factors related to protection resilience, and vulnerability, which may help guide future research, prevention strategies, and interventions. By actively involving the community in the research process, the study aims to ensure that its methods and outcomes are meaningful, accessible, and relevant to that population.

Participants complete a series of questions and activities that help researchers understand memory, thinking, behavior, and daily functioning. Participants may also choose to provide a blood sample and undergo a PET scan to help researchers study changes associated with Alzheimer’s disease.

This study is funded by the National Institute on Aging of the National Institutes of Health (NIA-NIH).

Findings from this study will help improve the understanding of Alzheimer’s disease and its relationship to dementia in adults with Down syndrome. The results may improve the ability to identify early signs of dementia and support the development of better tools for diagnosis, monitoring, and future treatments.

Participant’s privacy is very important to us, and we will take all necessary efforts to keep responses confidential. All data will be stored on password-protected computers accessible only to study staff. This means that researchers cannot disclose information, documents, or samples that could identify you without your permission . We take careful measures to ensure participants information remains secure and confidential.

This study is led by Dr. Luciana Mascarenhas Fonseca, Assistant Professor of Psychiatry at the Krieger Klein Alzheimer’s Research Center at the Brain Health Institute, Rutgers University, with more than 15 years of experience studying dementia and aging in adults with Down syndrome in Brazil, the United Kingdom, and the United States. She is deeply committed to this work and dedicated to improving the quality of life of individuals with Down syndrome.

Visit the About the Study section to learn more about the study. If you have additional questions, please email us directly at downsyndrome@rutgers.edu. We would be happy to provide more information about the study.

If our study is no longer funded, any information that could identify you will be removed from your research records. Your de-identified data (information that cannot be linked back to you) may still be used for future research studies. In these cases, additional consent from you would not be required.

You can stop participating in the study at any time. There is no penalty for leaving the study, and your relationship with the research team will not be affected. You may leave the study at any time by notifying the research team.

If you leave the study, you may withdraw your consent for the use of data and scans that have already been collected. To do so, you must submit a written request to the study PI, Dr. Luciana Mascarenhas Fonseca.

Our study partners with the Alzheimer’s Biomarker Consortium- Down Syndrome (ABC-DS) study to coordinate research efforts and reduce duplicate testing. While the studies share many of the same assessments, joining ABC-DS is optional and is not required to participate in this study. If participants choose to join both studies, some assessments- such as scans and blood collection- may be completed through our ABC-DS partners, but we will be with you throughout the process.

Some participants may feel uncomfortable, tired, bored, or frustrated during testing. You may skip any questions or stop participating at any time. There is also a small risk of confidentiality, but the research team takes steps to protect your information.

Optional procedures, such as blood draws and PET scans, have their own risks, which will be explained before you decide whether to participate in them.

Although this study is not intended to provide direct medical benefits to participants, taking part helps advance our understanding of brain health and aging in adults with Down syndrome. The information learned from this research may lead to better ways to identify early signs of Alzheimer’s disease and dementia, support the development of future prevention strategies, and improve research studies and clinical trials designed for the Down syndrome community. Participants will also be compensated for their time and transportation.