MATR Senior Twins Aging Impact Resources

Thank you for your interest in learning more about the Senior Twins Aging Impact request.

This page provides resources to help you make your decision about learning more

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Sample language of Request to Share Info with the study

FAQ/Info Sheet

Senior Twins Aging Impacts - Your Copy of the Permission Request

Note - this is not the actual online form you will complete, but rather, this provides the language you can expect to see on the online request form.

You are being invited to learn more about a study being conducted at the Minnesota Center for Twin and Family Research (MCTFR). You can complete this study from your home - no need to travel! The study team hopes to learn about various factors that impact healthy aging, particularly how interpersonal relationships influence cognitive health. To help reduce disparities in their conclusions, an additional factor they want to explore is how different ethnic backgrounds play a role in aging outcomes. Twins add even more impact to the research because it will help the study team understand how environmental and genetic factors play a role in this. Ultimately, their study conclusions may help with identifying potential factors that might aid in offsetting age-related cognitive health declines.

You are being invited because you are a MATR twin aged 70 years or older. It is also helpful that you may be of African American ancestry to help make sure the study can avoid disparities or gaps in its conclusions. Although full pair participation is ideal, your participation is important even if your twin is not part of this study. The study also needs same-sex fraternal and identical twins as part of this research.

The MATR is not carrying out the study procedures. Rather, we are introducing this study to you and inviting you to learn more from the study staff. If you say yes to this invitation to learn more, we will share your contact details with the study staff and they will contact you about participation. This is because the study staff are better able to give you details about this research. However, to help you decide about hearing more, here is a little bit about what participation involves. They will ask you to complete online interviews, a daily diary for about two weeks, and a story-telling task. There will also be cognitive test-brain teasers and an optional saliva (DNA) sample request. They will have staff that can assist you with each of these. Participants can qualify for up to $250 depending on what is completed.

We are contacting you to see if you want to learn more about study participation from the study staff. We will ask (or may have already asked) you to complete this request online or by phone. The request language will look almost exactly like the information you are seeing in this item.

Before you decide if you want to hear from the study, here are some things you should know:

· All steps are voluntary. Decide what works best for you without any negative consequences if you choose to say no.

o If you say no to hearing from the study staff: we will not share your information with the study and we will stop contacting you about this study.

o If you say yes to hearing from the study staff:

§ You can still withdraw at any time.

§ You are not agreeing to participate in the study itself. Rather, the MATR will share your name and your contact information with the study team so that they can get in touch with you, tell you more, and you can decide at that time if you would like to participate or not.

§ In addition to sharing your contact info, the MATR will also include a few other details, such as your date-of-birth or age; coded identifiers (this helps protect your confidentiality); a family ID number which matches your twin's and a pair number in the family; your sex, race, and, if we have it, your zygosity or answers to zygosity questions (whether or not you are identical or fraternal).

§ Although we do not discuss one twin's participation in the MATR or a study with their co-twin without permission, if you decide to join in this new study and your co-twin does too, then you both may come to realize that you are each part of the MATR and possibly that you are each participating in this University of Minnesota aging twin study.

§ The MATR takes rigorous steps to protect your information; however, you should keep in mind that whenever you share information about yourself, there is always a risk of a loss of confidentiality and privacy.

o Questions? You are welcome to wait for our phone call. There is also an option on the request form you can select to receive a phone call from us. Or, you can contact us at matr@vcu.edu or 1-800-URA-TWIN and reference the Senior Twins Study.

o Other Questions? If you have general questions about your rights as a research participant in this or any other research, you may contact the IRB at the VCU Office of Research and Innovation and reference the Senior Twin Study: 800 East Leigh Street, Suite 3000, Box 980568, Richmond, VA 23298. Telephone: (804) 827-2157

On the actual request form, as a verification step, we will collect your full name and month & year of birth.

On the actual request form, you will see the following question:

Would you like to hear from the study? If so, do we have your permission to share the information we have described with the study staff?

Here are the possible answers you will see on the form.

- Yes, I grant my permission to the MATR to share my information with the study staff so that they may contact me to tell me more about the study.

- No, I decline to have my information shared. I am not interested in learning more about this study.

- Unsure, I have questions and would like to speak with a MATR Interviewer before deciding.

On the actual request form, we might also ask a few questions about your zygosity (if you are fraternal or identical) and your contact preferences.

Feel free to download a copy of this information using this link: {turnoverdownload} PDF Link is added once language is approved.

MATR Senior Twins Aging Impacts Info Overview

Introduction & Purpose:

The MATR is contacting you to invite you to learn more about a twin study being conducted through the University of Minnesota (UMN) - no travel needed! The UMN study team hopes to learn about various factors that impact healthy aging, particularly how the interpersonal relationships influence cognitive health. To help reduce disparities in their conclusions, an additional factor they want to explore is how different ethnic backgrounds play a role in aging outcomes. Twins, like you, add even more impact to the research because it will help the study team understand how environmental and genetic factors play a role in this. Ultimately, their study conclusions may help with identifying potential factors that might aid in offsetting age-related cognitive health declines.

Why you?

Your help is needed to add value to this study because you are a MATR twin aged 70 years or older. It is also helpful that you may be of African American ancestry to help make sure the study can avoid disparities or gaps in its understanding of more nuanced factors that play a role in healthy aging. Although full pair participation is ideal, your participation is important even if your twin is not part of this study. The study needs same-sex non-identical (fraternal) and identical twins as part of this research.

What's involved?

For the MATR part, related to this contact, involvement is very minor and takes 5 to 10 minutes. During our contact, we share a little information about the study, ask if you are interested in learning more from the study staff, and, if so, we verify your contact details and request your permission to share this information with the study staff so that they can contact you.

Beyond that, the MATR is not carrying out the study procedures. If you say yes to this invitation to learn more, we will share your contact details with the study staff and they will contact you about participation. This is because the study staff are better able to give you details about this research since they are the ones actually carrying out the study. However, to help you decide about hearing more, here is a little bit about what participation in the study itself involves. All procedures can be completed in your home or a location of your choosing. The study will provide a tablet device and support on how to use it. This tablet will be used for most of the study tasks. They will ask you to complete online interviews, a daily diary for about two weeks, and a story-telling task. There will also be cognitive test-brain teasers and an optional saliva (DNA) sample request. They will have staff that can assist you with each of these. Participants can qualify for up to $250 depending on what is completed.

Do I have to travel anywhere to participate?

No, travel for this is NOT required. All parts of this can be done remotely from your home.

How do I sign-up or say 'not interested' to learning more about this study?

The MATR is contacting you to see if you are interested in hearing from the study staff. You may have or soon will receive an email from us with a link to an online form to complete to sign-up to hear from the study staff or let us know you are not interested. You might also receive a letter from us that has a QR barcode that you can use to access the online form (using a smartphone camera). We may also be trying to call you about this study so you can wait for our call or contact us directly at matr@vcu.edu or 1-800-URA-TWIN to see if you qualify. Make sure to mention the "Senior Twins" Study.

What happens if I sign-up or say no to learning more about this study?

Whether you complete the sign-up step online or by phone, you will be asked to verify or update your contact information with us as well as a few other details related to contacting you. We will also ask for your permission to allow us to share your name and contact details with the study staff so that they may contact you. This information would also include a few demographic details about you, like your age or date of birth, sex, race, and zygosity (identical or non-identical).

This study is completely voluntary! So, it's okay to say 'not interested' or to decline at any point. If you decline from learning more, we will stop contacting you about this study. We might still ask you to update your information with us (the MATR), but that is optional as well.

If I say 'yes' to hearing from the study staff am I required to participate in the study?

No, you are not! As always, participation in any study is voluntary. If you say 'yes' during the sign-up step, you are merely agreeing to learn more from the study staff. Saying 'yes' to the MATR request allows us to share your contact information with the study so that they can contact you with more details. The study staff will tell you more and then ask if you'd like to participate in the study itself. You can always say, 'no, not interested' and, even if you agree to participate, you can always change your mind later and withdraw from the study.

Is my participation of any use if my twin does not also participate?

Yes! Having as many participants be part of this study as possible is very important to the research analysis. However, having both twins in a pair offers even more value to the overall study conclusions. So, while it's not required that both twins participate, it is helpful because it allows the study to make conclusions about the impact of shared environmental factors and heritability of age-related genetic changes. Since the study team anticipate having the majority of full pairs being part of the study, then even in those instances that only one twin can be part of this study, this is still quite valuable because there is still the opportunity for the study to look for trends related to being twins.

What if I have lots of detailed questions about specific parts of the study?

You can let us know your questions and we will do our best to answer them or get answers from the study. However, since they are the ones overseeing the procedures, the UMN study staff will be the most informed about the specifics of the study so we recommend that you sign-up to hear from them and ask your questions at that time. If, after the study contacts you and answers your questions, you decide you are not interested, you would just decline from study participation when asked.

What is the MATR's role in this study?

Since you are part of the Mid-Atlantic Twin Registry (MATR), we act as the liaison, or go-between, between you and the study. This means that your name and contact info are not shared unless you want them to be and that you won't hear from the study unless you give us your permission to share your information. So, while we are not directly part of the research, we help protect your information and send out invitations for the study. If you go on to be part of the study, then they will let us know your participation status and status dates as well as updates to your contact information and zygosity. There is also the chance that they may share some or all of the de-identified study data back to the MATR for future, approved research.

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