Twins ACT Study Overview & Info

Your participation will help researchers learn more about chromosomal changes over time

and their impact on health outcomes as we age.

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FYI - go.vcu.edu/twinsact will take PTs to this "survey"

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Sample language of Request to Share Info to Twins ACT Study

Twins ACT Study Info Sheet

Twins ACT (Acquired Chromosomal changes over Time) Study -

Sample Language Requesting Permission to Share (aka Turnover) Your Contact Information

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 this study because you participated in a similar effort, also conducted by Dr. Colleen Jackson-Cook, about 15 years ago. Like the prior study, this one will look at genetic changes and their relationship to aging or certain types of stress and age-related health conditions. There have been advances in the science that looks at this relationship, which is why you are being asked to participate again. Combining the information from your prior participation with new materials and advances in the science that looks at this, gives the researchers a powerful advantage to learning about age-related health conditions. Ultimately, outcomes from this study may help with identifying potential methods to help offset age-related health declines.

Although participation of both twins is helpful, it is NOT required. Your participation is important even if your twin is not part of this new study. The study also needs fraternal and identical twins as part of this research.

Dr. Colleen Jackson-Cook and her study team would like to tell you more about participation. To help you decide if you would like to hear from them, below is a summary of what would be involved in study participation:

Reviewing the study consent, which covers details about purpose, risks and benefits, study involvement, etc.
Answering questions on lifestyle, health, diet and habits surveys.
Providing biospecimens which will be used to obtain the data to evaluate biological changes over time, these include: a blood sample and a cheek swabbing sample. You do NOT have to come to VCU in Richmond. This can be done at a location convenient to you.
All data & samples are confidential and de-identified (which means they are assigned a coded ID and are not attached to your name or other identifying information).
The study provides a $30 gift card for study participation

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

Your decision is completely voluntary. Decide what works best for you without any negative consequences if you choose to say no.
- If you say no: we will not share your information with the study and we will stop contacting you about this study.
- If you say yes to the preference question below: 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; pair number in the family; your sex, race, and, if we have it, your zygosity (whether or not you are identical or fraternal).
- Also, although we do not discuss one twin's participation in a study with their co-twin, if you decide to join in this new study and your co-twin does too, then you both may come to realize that you each participated in one of the prior studies, the new study, as well as being in the MATR.
- Regardless if yes or no, to thank you for your time reviewing this and completing the request, the study is providing a token of appreciation. You have the option of being entered into a drawing for one of twenty $15 e-gift cards (this is separate from any study compensation).
Questions? Contact us at matr@vcu.edu or 1-800-URA-TWIN and reference the Twins ACTStudy.

Request to share (aka turnover) your information

You wll be aksed if you 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? The options will be:

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.

There is a drawing for $15 e-gift cards for completing this step:

If your name is selected as one of the drawing recipients ("winners") for one of the $15 e-gift cards being provided as a thank you for taking the time to complete this request, you will be notified by email. There is also other information (like your permanent mailing address) that VCU requires us to have a record of prior to making payments, which we can verify or collect now.

Feel free to download a copy of this information using this link: {turnoverdownload}

Attachment:MATR ACT Study Info & Permission to Share Contact Info_04.25.24.pdf

Twins ACT (Acquired Chromosomal changes over Time) Study Info Overview

Introduction & Purpose:

Past research has shown a relationship between aging, a person's genetic makeup and chromosome structures, and the development of age-related health conditions. There is a newly recognized type of acquired genetic change (cytosolic DNA). This has shown to be an important player in age-related biological changes that can lead to health conditions. Because of this new knowledge, Dr. Colleen Jackson-Cook and her research team are launching a new initiative to learn more about how this type of genetic change might be impacted by genetic versus environmental influences and if it is related to age-related health conditions.

Use the following link to download this study information page:

Why you?

Your help is needed to add value to a study on aging and chromosomes that you participated in about 15 years ago. You were selected because you participated in studies conducted by Dr. Colleen Jackson-Cook that looked at the impact aging and certain types of stress had on a person's chromosome structure and genetics. For those studies, you likely completed a survey and provided biospecimens (blood and cheek cell samples). You may have also received back information about your chromosomes and/or zygosity.

Your participation is value-added because the researchers can use data and samples you previously provided and compare that with new information gathered as part of this study to look at any changes that have occurred over time. Having both fraternal and identical twins from the prior studies participate now will provide this study with dramatic advantages to learning more about age-related biological changes and produce insights needed to develop targeted therapies to reduce and/or alleviate age-related health conditions.

What's involved?

Discuss questions you may have with one of our genetics team members

- Complete a health and lifestyle questionnaire

- Decide if you want to include your data/specimens in a research repository

- Have the inside of both cheeks rubbed with a toothbrush

- Have blood collected (about 2 ½ tablespoons)

How long will it take?

Time needed: approximately 45 minutes to complete all of the activities for this study.

Do I have to come to VCU to participate?

No, coming to VCU is NOT required. You can participate at a location convenient to you OR visit the VCU study site - your choice!

Will I get paid?

Yes! Twins that complete the study qualify for a $30 gift card.

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 "Twins ACT" 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 study is completely voluntary! So, it's okay to say not interested at any point. If you decline for 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.

Anything else about the sign-up to learn more step?

Whether you say yes or no to hearing from the study, as long as you complete the sign-up online form or phone call with us, you will have the option of being entered into a random drawing for a $15 e-gift card (sent by email) to say thank you for your time completing this step.

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 of the goal number of 200 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 changes over time by comparing previous data with new data.

Will I receive information back about my chromosome or genetic makeup if I am part of this study?

In the previous wave of the study, you were provided information about your chromosomal make-up and zygosity. If you would like a reminder of this information, we can re-share it with you. At this time, the study does not plan to share any additional individual information with participants, but will share the overall study results when the research is completed. Also, if they happen to notice something that they think you should be aware of, they will try to let you know about it (though this is not likely to happen).

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. However, the 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, or we can put you in touch with someone from the study (this means we may need to share your name and contact information with the study staff).

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.

Who do I contact if I have questions? At this stage, if you have questions, it's best to contact the MATR by leaving a voicemail on our toll-free number (1-800-URA-TWIN) or emailing us at matr@vcu.edu and letting us know you are calling about the Twins ACT Study.

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