About the cerdar community

The CERDAR Community acts like a registry or contact list. This Community 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 community of people interested in dementia research, and provide opportunities for participation in our 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 Community 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 Community.

• Whether or not you sign up is up to you.

• The Community includes investigators who may invite you to participate in new research projects.

• If you join the Community, you can choose not to participate in research projects.

• You can agree to take part in the Community 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 Community, we will:

• Share with you information on dementia in a newsletter or email.

• 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 Community, we ask you to consider volunteering 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 CERDAR Community 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 sign up or participate.

There is no cost to you to sign up or participate.

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, including Community 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.

To Contact the Research Team:The researcher responsible for the CERDAR Community is Dr. Kristen Jacklin. If you have questions later regarding the Community or your participation, you are encouraged to contact Dr. Jacklin's research team by phone at 218-726-8601 or by email at cerdar@d.umn.edu.

To Contact Someone Outside of the Research Team:This research has been reviewed and determined exempt by the Institutional Review Board (IRB), which is part of the Human Research Protections Program (HRPP). If there is an issue you would like to discuss with someone who is not on the research team you are encouraged to call the HRPP Research Participants’ Advocate Line at 612-625-1650 (Toll Free: 1-888-224-8636) or go to z.umn.edu/participants. For example:

• Your questions, concerns, or complaints are not being answered by the research team.

• You are having difficulty reaching 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 provide feedback about this research to someone who is not on the study team.

Yes. You can contact the CERDAR directors or project coordinator at any time via phone or email.

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 CERDAR team or the HRPP. See “Whom do I contact if I have questions, concerns, or feedback about my experience?” of this form for contact information.

You will not be paid to be a member of the Community. If you agree to take part in a research study associated with this Community, we may compensate you for your time. That will be declared in a research project overview before signing up for a study.

When you join the CERDAR Community you can opt to receive bi-annual newsletters, which will contain project updates and findings, and links to relevant publications. Additionally, we look forward to giving presentations to communities throughout Northern Minnesota sharing research results.

Research results will help inform intervention pilots with the goal of bridging resource gaps. Research results will be shared with various agencies who could use our evidence based data to update their practices and policies, and/or advocate for policy changes.

Please reach out to us if you have questions or comments about the CERDAR Community, we would enjoy hearing from you.

Email: cerdar@d.umn.edu, Phone: 218-726-8601