About the CERDAR Registry
The goal of research registry is to bring together rural residents 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. We are building this registry to create a community of people interested in dementia research, and to provide opportunities for participation in research. By doing this, we hope to learn about how living with memory problems differs in rural communities in order to improve the quality of life for older rural residents in the future. The CERDAR Registry will be an information exchange where rural residents will share their experience with the CERDAR investigators and they, in turn, will share new research findings with the registrants.
- Whether or not you take part in the registry is up to you.
- The registry includes investigators who may invite you to participate in new research projects.
- If you join the registry, you can choose not to particpate in research projects.
- You can agree to take part in the registry and later change your mind.
- You can contact us for assistance or ask questions before you decide and join at any time.
If you are a non-professional caregiver or helper, or you are personally affected by memory problem: If you join the CERDAR registry, we will:
- Share with you information on dementia in a newsletter or email.
- We will invite you to complete a quick memory test (not required).
- We will ask that you tell us your thoughts and experiences with dementia.
- From time to time, we will send you an invitation to join studies. You are not required to join them, but we hope that you will read about them to see if you might want to join.
If you are a memory professional: If you join the CERDAR registry, we ask you to consider volunteer to do any one of the following 3 things:
- Consider participation as a research participant in “key informant” interviews to help us understand dementia care in your area.
- Consider supporting the registry in the development and dissemination of news updates and newsletters from CERDAR by periodically contributing content.
- Share letters of invitation, postings, or handouts describing CERDAR with members of your community.
You do not have to participate in this registry.
There is no cost to you for participation in the registry.
We will never sell your information, or the information of non-professional participants, to telemarketers and we will never attempt to sell you any product. We will limit the use and disclosure of your personal information, including registry records, to members on our team who have a need to review this information. 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.
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.
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.
You will not be paid to be a member of the registry. If you agree to take part in research studies associated with the registry as a professional (advisory groups, key informant interviews), they may pay you to compensate for your time. That will be described in the research projects.
Yes. All of these details are shown in what is called an “Informed consent”. Further details are provided in greater depth in the university system. Please read the next several screens carefully if you decide to explore it further.