The A-T Children’s Project recruited a small number of participants for this study. Thank you to the families who agreed to participate!Â
There is a new study sponsored by Insmed Incorporated (a pharmaceutical company) conducted by the A-T Children’s Project.
Children with A-T sometimes experience involuntary movements of the head and upper body. This study is designed to collect videos of these movements in children with and without A-T. Parents and/or caregivers will capture videos of their children completing 2 tasks at home using a configured app on their cell phones. The videos will then be studied to see whether changes in involuntary movements can be measured over time, and if differences between children with A-T compared to those without A-T can be detected. Data obtained in this study using the app and videos may give researchers a new way to track disease progression in children with A-T.
The study will include children between 1-10 years of age (less than 11 years) – 10 children with A-T and 5 children without A-T. To qualify, participants should be able to stand without support for at least 5 minutes, and children with A-T aged 3 years or older should be able to walk approximately 33 feet (10 meters) without support from a helper and without the use of a walking aid. (Please note: your child will not have to conduct these tasks for this long on video – they are just part of the overall eligibility requirements.) Also, children should not be currently participating in a drug trial, had previous or active treatment with a chemotherapeutic agent, or a condition that would compromise measurements or study participation.
If your child participates, you will be shown how to download and use the app on your phone. You will record 4 videos (each at least 30 seconds long) of your child – 2 of them standing, and 2 of them sitting – every week for 6 weeks. You will receive a gift card at the end of the study for your participation. If you and your child are interested in joining the study, please contact jennifer@atcp.org or 954.481.6611.