The Center for Community Engaged Rural Dementia and Alzheimer's Research
What is CERDAR?
CERDAR is a community of people interested in better understanding brain health, dementia, and caregiving in rural areas in Northern Minnesota. CERDAR is guided in its work by a Community Advisory Group, and a Rural Research Advisory Group. Our goal is to bring together rural residents and researchers at the Memory Keepers Medical Discovery Team who are interested in dementia, including those who have concerns or are affected by memory problems --whether or not they have been diagnosed by a professional. By joining CERDAR, you can receive a newsletter with research updates, can provide input for future research ideas, and participate in current research projects, which include, for example, being interviewed about your concerns about memory loss, your ideas about healthy aging, or your experience caring for a person living with dementia.
How to Join the CERDAR Community
You can sign up to receive our newsletter by clicking on the “Join now” button above. This button will take you to our “landing page” where you can watch a brief video about CERDAR and list an email or other address to receive our newsletter and learn about opportunities to participate in our research.
We also ask you to tell us how you came to know about CERDAR and ask you to provide some basic information about yourself, including age, gender, and where you live in Northern Minnesota by providing your county, town, and zip code.
If you join the CERDAR community, you can choose not to participate in research projects. You can also contact us at any time to have your name removed from our CERDAR Community list.
You can contact us for assistance or ask questions before you decide and join at any time.
How to Join our Rural Memory Research Projects
After hitting the “Join now” button, you will be taken to our landing page.
The landing page allows you to describe yourself; for example, as a person who is concerned about their memory, as a healthy older adult, as a caregiver, or as a health professional. This information helps our researchers to determine how you might participate in different research projects or interviews. If you have expressed interest in participating in our research, one of our community-based researchers or other staff may then reach out to you to describe in detail specific research projects and see if you would like to participate, assuming you meet the criteria for the study.
Will it cost anything to participate in CERDAR?
NO. There is no cost join CERDAR.
What happens to the information I provide when I join CERDAR?
We will never sell your information to telemarketers, and we will never attempt to sell you any product. We will limit the use and disclosure of your personal information to members on our team who have a need to review this information.
Should you participate in a specific rural memory research project you will be asked to sign a consent form that details how the information you provide will be used. All personal health information is protected, and all personal information is treated as confidential. Organizations that may inspect and copy your information include the University of Minnesota Institutional Review Board (IRB), the committee that provides ethical and regulatory oversight of research, and other representatives of this institution, including those that have responsibilities for monitoring or ensuring compliance. We may publish the results of this research. However, we will keep your name and other identifying information confidential unless you specifically give us permission to use your name in the publication, or other media.
Whom do I contact if I have questions, concerns, or feedback about my experience?
This research has been reviewed and approved by an IRB within the Human Research Protections Program (HRPP). To share feedback privately with the HRPP about your research experience, call the Research Participants’ Advocate Line at 612-625-1650 (Toll Free: 1-888-224-8636) or go to z.umn.edu/participants. You are encouraged to contact the HRPP if:
- You cannot reach the research team.
- Your questions, concerns, or complaints are not being answered by the research team.
- You want to talk to someone besides the research team.
- You have questions about your rights as a research participant.
- You want to get information or provide input about this research.
Will I have a chance to provide feedback after the study is over?
Yes. You can contact the CERDAR directors or project coordinator at any time via phone or email (see question above).
Additionally, the CERDAR investigators or HRPP may ask you to complete a survey that asks about your experience as a research participant. You do not have to complete the survey if you do not want to. If you do choose to complete the survey, your responses will be anonymous.
If you are not asked to complete a survey, but you would like to share feedback, please contact the registry team or the HRPP. See the “Investigator Contact Information” of this form for registry team contact information and “Whom do I contact if I have questions, concerns, or feedback about my experience?” of this form for HRPP contact information.
Will I be compensated for my participation?
You will not be paid when you join the CERDAR community. If you agree to take part in a specific research study, you will be compensated for your time. The amount of compensation varies between projects and is described in the research project consent form.
Is there more to learn about participation in CERDAR?
Please reach out to us if you have questions or comments about CERDAR, and our specific research projects -- we would enjoy hearing from you.
Email: cerdar@d.umn.edu, Phone: 218-726-8601