Tic Clips Frequently Asked Questions

Yes! Tic Clips is approved by the University of Minnesota Institutional Review Board (IRB) to include participants from most countries around the world. There are some exceptions. In addition, we offer you the consent forms appropriate for the country where you live. We’re happy to have you. Welcome!

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

We offer a small compensation for US participants who submit videos that meet our quality assurance criteria. More details related to requirements are outlined in both the consent form and in the Qualtrics survey. We will work closely with you, if you are running into any difficulties recording and submitting videos. For specific questions related to this please email us at [email protected].

It will take approximately 30-45 minutes to complete the initial consent forms, surveys, and video submission the first time.

As is stated in the consent form, you can decide to stop participating in this study at any time. You have the opportunity to fill out surveys and submit videos monthly for up to 12 months. Our research team is interested in seeing how tics change month to month. Participating monthly allows us to better understand your experience with tics. Compensation to US participants is only provided for the first two months of participating. After that, you can choose to volunteer your time to continue to participate. The number of times you participate 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.

Yes, absolutely. We encourage you to recommend participation in this study to people you know via social media, email, or word of mouth. Thank you. Creating awareness about participating helps further research about Tourette is valuable for everyone involved. In order for individuals to join Tic Clips they must first sign up for our research registry. 

Any information you provide is helpful! Participating in this research is a way to improve our knowledge of tics and the diagnosis process. The more we learn, the more the tic community benefits. Please email us at [email protected] if you have any concerns or feedback related to improving the research participant experience.

Yes, this is okay. If you have a wall that is blank, try to record there, but it is not required. The most important thing is that you are the ONLY one in the video and on audio and that you are visible from your waist up, facing the camera.

Try to find a private, quiet place to record your video or try recording at another time when there is no noise. We will need to ensure that we’re capturing only your experience in a “resting” state and when you’re trying to suppress your tics.

You will submit two videos. Each one should be 3 minutes long. The platform we use to collect videos, Qualtrics, will stop recording once 3 minutes has passed. 

That’s no problem! We don’t expect that a short video, one snapshot in time, can reflect your typical experience with tics. We rely on these “snapshot” videos from hundreds of people to understand more about tic experiences. Simply do your best to follow the instructions and submit your video. We appreciate your efforts!

You can simply record another video until you are comfortable with it before submitting. You will never be asked to do anything that makes you uncomfortable.

We know that it can sometimes be frustrating to get all of the technology involved to work! For video submission problems, you can contact us and we can walk you through the steps. Once you let us know, we will provide you with an alternative method to submit your video if you are running into issues submitting via the Qualtrics platform. You can email us at [email protected] or call us at 612-626-5471. We will do our best to respond to your message within 2 business days.

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 separately 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 Tic Clips.  Find out more about the University of Minnesota’s privacy policies.

Any information you share will be kept confidential. 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 Tic Clips. 

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 to help you complete your Tic Clips submission. We will reach out to you to participate on a monthly basis, if you are interested. You have the option to request to be removed from our email notifications at any time. 

The study team will reach out to you if there is any missing information from your survey responses or if your video recording does not meet our quality assurance check. We may ask you to attempt to re-record a video submission using the instructions we provide.