In addition to our Center’s main longitudinal research study, the University of Michigan Memory and Aging Project (UM-MAP), we invite anyone interested in participating in aging research studies to join our Michigan Neurological Data Set, or MiNDSet Registry.
What is the MiNDSet Registry?
The MiNDSet Registry is a database created to match interested older adults – with normal cognition, with mild cognitive impairment or dementia, or those caring for someone living with mild cognitive impairment or dementia – to studies offered at the Michigan Alzheimer’s Disease Research Center (MADRC) that they are interested in and qualified for. The MiNDSet Registry is a database of information that helps us connect research volunteers with appropriate studies based on interest, eligibility, and additional information provided in the screening questions.
Research Recruitment Coordinator, Kate Hanson, states “The main goal of the MiNDSet Registry is to match older adults with research studies that they find interesting and relevant to their lives. The registry also helps provide our study teams with some initial information about prospective volunteers that may help in deciding if they are eligible for a certain study before we contact them.”
What do we do with information in the MiNDSet Registry?
Once the screening questions in our Research Volunteer Form are completed, participants are entered into the MiNDSet Registry. All information in the MiNDSet Registry is confidential. We store this information in a secure database and share it with other researchers who are studying brain aging and dementia. Protecting the privacy of this information is of upmost importance, and we only share data with researchers who have completed a strict review process and who are leading studies which we have deemed appropriate to support.
After submitting information to the MiNDSet Registry, participants may be invited to participate in current or future research studies based on the information they provide. The corresponding study team will review and explain the risks and benefits of a study so that participants can make an informed decision about whether or not they would like to participate. Participation in a study is entirely up to the participant and their family.
What types of studies might someone in the MiNDSet Registry participate in?
At any given time, we support roughly twenty studies in addition to our longitudinal study, UM-MAP. The types of studies we support vary widely, including medication studies, observational studies, caregiver studies, and more. For a complete and current list, visit our website at https://alzheimers.med.umich.edu/research/.
If someone joins the MiNDSet Registry, can they remove themselves if they later decide that they do not want to participate?
You can remove yourself or a family member at any time by calling or emailing our research team. If you choose not to participate in research, we will update our registry and you will no longer be contacted by research teams.
Can someone join the MiNDSet Registry if they are already in the UM-MAP study?
Yes! You are automatically enrolled into the registry as an UM-MAP volunteer. You have the choice, however, to restrict your participation to this study alone. If you prefer to be contacted for other research, you can indicate your preference via the UM-MAP consent form at your yearly visit.
How Does Someone Get Started?
We are always looking for interested older adults to join the MiNDSet Registry. For more information and to get started, visit the research tab here to fill out a Research Volunteer Form. Additionally, prospective participants can call our Research Recruitment Coordinator, Kate Hanson, at 734-936-8332 to fill out a Research Volunteer Form over the phone.