MnTiC Registry Frequently Asked Questions

After joining the registry, we will compare the information you gave us with our current study eligibility information. We will invite you via email to join the studies that you are eligible for. 

Yes! We have the capacity to accept people from most countries across the world. If you live outside of the US, we will have you sign an additional consent form. 

You may join from any device with an internet connection, including laptops, tablets, and your phone. The layout might look different on different devices but the information you receive will be complete.

No, we are not able to compensate the hundreds of participants who join the registry. However, there might be studies for which you are eligible in the future that do provide compensation. We will notify you about these studies through the registry. We appreciate your willingness to help people living with tics!

It will take only about 5 to 10 minutes to complete the consent forms and survey to join the registry.

As is stated in the consent form, you can decide to leave the registry at any time. Your decision to leave the registry does not have any impact on your ability to participate in any of our other studies or to receive care at the University of Minnesota.

Not a lot -- we promise! We will contact you to let you know if you/your child is eligible to participate in one of our available research studies. We may also contact you if we are missing any required information from your registry consent form or survey. If you opt in to joining our email newsletter, you will receive a few emails per year containing updates and new research opportunities. You can always opt in or out of the newsletter whenever you want.

Yes, absolutely. We encourage you to recommend joining the registry to people you know via social media, email, or word of mouth. Thank you. Creating awareness about joining helps further research about Tourette and OCD and is valuable for everyone involved.

Very. At the University of Minnesota, we use secure data storage platforms that are compliant with the federal Health Insurance Portability and Accountability Act (HIPAA). Whenever possible, we store the information that identifies you separately from your data. 

We use software called Qualtrics to collect survey responses and videos. The University of Minnesota has a license with Qualtrics that ensures Qualtrics is compliant with federal Health Insurance Portability and Accountability Act (HIPAA) laws. This means that the level of security and privacy is equivalent to your medical records at the doctor's office. Read more about this on this UMN Qualtrics page

Only qualified individuals who have completed study specific protocol training and mandatory education about how to maintain privacy and comply with Health Information Privacy laws (called HIPAA) will review your surveys. Your data will be used for research purposes only. Whenever possible we store the information that identifies you separate from your data. More information on who has access to data is explained in our consent form that you will review prior to enrolling in the MnTiC Registry.  Find out more about the University of Minnesota’s privacy policies.

Any information you share will be kept confidential. Once you join the registry, you will have the option to participate in studies, either online or in person at the University of Minnesota. You will always have the freedom to opt in or out of any research activities. Any results we share from our studies will not contain information that identifies who you are. More details on how we use information are listed in our consent form that you will review prior to enrolling in the MnTiC Registry.

Your data is stored securely regardless of where you live. At the University of Minnesota, we use secure data storage platforms that are compliant with the federal Health Insurance Portability and Accountability Act (HIPAA). Whenever possible, we store the information that identifies you separately from your data.

You can email us at [email protected] or call us at 612-626-5471. We will do our best to respond to your question within 2 business days.

You can visit our website to learn more about our ongoing studies and research results published in the past. You can subscribe to our newsletter for quarterly updates. 

We will contact you up to three times when we think you might be eligible for a new study.

If we are missing any data that our university requires in order for you to officially join the registry, we will reach out to you directly. If you join a research study made available to you through the registry, you may receive feedback about your data for that specific study.