Co-Research Team
What is Co-Research and who are we?
Co-research is the intentional inclusion of groups being studied on research teams. Co-researchers use their knowledge and lived experience to participate in all stages of the research process such as creating research questions, collecting and and analyzing data, and sharing findings.
We are a team of researchers with and without Down syndrome at the Boston University School of Public Health. Our co-research program aims to include people with Down syndrome in research, working together on health issues affecting their community. In 2022, we began our collaboration and since have researched topics including mental health and independence and presented at conferences across the U.S.
Learn more about us here: People
Our Projects
New article: Down syndrome versus dementia
In this first-person essay, Eden Rapp, a co-researcher with Down syndrome, reflects on her experience supporting her grandmother with Alzheimer’s disease and connects it to the importance of health and advocacy for people with Down syndrome. She openly shares her experience and calls us to action to listen to people with Down syndrome as experts in their own lives, bringing unique perspectives that are critical to conversations about dementia within the Down syndrome community. Read the full article here: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.70204
Independence Interview Project | 2024
In 2024, Our DSTOTHEMAX Co-Researcher team with adults with Down syndrome was curious about improving the independence and well-being of people with Down syndrome. The team has been interviewing health professionals and experts in the field who work with adults with Down syndrome in the United States.
Mental Health Survey Project | 2023
In 2023, we conducted a project about mental health for adults with Down syndrome. We created an online survey to understand stress, anxiety, and coping mechanisms. As a team, we created the survey questions, analyzed responses, and shared the results in articles and presentations. Read about our project in our easy read article below:
