UCLA CHAMPION Study (Chromatinopathies and Autism: Motor Phenotyping and Indicators of Neurodevelopment)

This study is being conducted both in-person at UCLA in Los Angeles and virtually. Eligible children anywhere in the United States can be enrolled - study materials would be mailed and assessments are administered via videoconferencing if travel to Los Angeles is not feasible.

The CHAMPION Study is being led by Dr. Rujuta B. Wilson, MD, a neurodevelopmental pediatric neurologist and researcher at UCLA who studies genetic neurodevelopmental conditions. This study is enrolling children 1 to 5 years old with Koolen-de Vries Syndrome or other Chromatin Modifying Disorders (also known as Chromatinopathies). Motor challenges tend to affect children who have KDVS or other Chromatin Modifying Disorders and this research hopes to develop better tools/methods to help identify, monitor, and evaluate delays as well as come up with better treatment and therapeutic options. Another goal of this study is to better understand the behavioral, cognitive, and social development of children with KDVS. As a part of the study, behavioral, cognitive, and autism symptom assessments of your child will be administered. In addition, your child would be asked to wear small sensors on his/her arms and legs during the day over a two-day period at home. Lastly, a parent interview is conducted to gain further insight into your child’s medical history, behavior, and development.

Your child will receive up to $100.00 for participation and you will be provided verbal and written feedback about your child’s development. If you are interested in having your child participate in this study or would like to seek additional information, you can contact the study coordinator via email or phone: [email protected] / 310-206-1045.