Neurofibromatosis type 1
Neural Underpinnings of Attention in Children with NF1
We are interested in learning more about attention both behaviorally and neurologically in children with neurofibromatosis type 1. Research suggests that children with NF1 experience an elevated rate of attention difficulties in comparison to same-aged peers; however, there is very little research about how these difficulties manifest in the brain and how they change over time. Children are eligible to participate if they are between the ages of 6 and 10 who have been diagnosed with NF1, as well as those who are typically developing. Participants must speak English as their first and primary language. Participation involves one session (about 2 hours) with cognitive tasks both with and without EEG. You will be asked to complete questionnaires about your child’s behavior and attention. All child sessions will be video recorded. Families who complete the session will receive a $40 gift card. Each child will also get to choose a book to take home. You may also request a summary of your child’s performance on the developmental testing measures. Research sessions take place at the Child Neurodevelopment Research Lab at the University of Wisconsin – Milwaukee, where we have the dedicated quiet space and the necessary electronic equipment. Sessions can take place during the week (morning or afternoon) or on weekends. To participate, please contact the Child Neurodevelopment Research Lab at the University of Wisconsin – Milwaukee at (414) 229-2586 or cnrl-eeg@uwm.edu. We look forward to hearing from you!
This work is supported by a Young Investigator Grant to Sara Pardej from the Children’s Tumor Foundation.
This flier briefly describes the study: NF EEG Flier
Williams syndrome
Development of Behavioral Play Therapy for Anxiety for Children with Williams syndrome
Children with Williams syndrome often experience considerable anxiety and associated emotional dysregulation. There are few treatments developed for young children with anxiety difficulties, and even fewer evaluated for use with children with developmental disabilities. Help us develop guidance for therapists working with children with Williams syndrome to reduce anxiety and fear. This research is open to families of children with Williams syndrome who get very anxious or afraid in particular situations (e.g, brushing hair, haircuts, flushing toilets, birthday parties). Dr. Karen Levine and Dr. Bonnie Klein-Tasman are working together to develop a manual to help guide therapists to use a play-based approach to reducing fear and anxiety. Parents will be interviewed via skype about their child’s anxiety, and will be asked to complete some questionnaires about their child’s behavior, anxiety, and fears. Children will complete a measure of cognitive abilities. Children will then participate in 1-3 play sessions (depending on availability and individual needs) aimed at reducing anxiety and fear.
This study takes place at the University of Wisconsin-Milwaukee Child Neurodevelopment Research Lab. If you have financial need, funds can be made available for your airfare or mileage for travel, as well as for lodging near UWM. Please contact us at 414-229-2586 or cnrl-wsbpt@uwm.edu for more information.
See here for additional information: WSBPT Study Flier
This research is supported by a grant from the Williams Syndrome Association Grant #0110.
Feasibility and Acceptability of Behavioral Play Therapy for Anxiety for Children with Williams syndrome
We are also completing 2 online anonymous survey studies: We are interested in gaining parents’ and professionals/providers’ perspective on Behavioral Play Therapy for children with Williams syndrome and other developmental disabilities.
To complete the Anonymous Parent Feasibility Questionnaire go here: Anonymous Parent Feasibility and Acceptability Questionnaire.
To complete the Anonymous Service Provider Feasibility Questionnaire, go here: Anonymous Provider Feasibility and Acceptability Questionnaire
This research is supported by a grant from the Williams Syndrome Association Grant #0110.
Typically Developing Children
Registry for Typically Developing Children to Participate in Research
In our research, it is often helpful to compare the learning and development of children with neurodevelopmental disorders with the learning and development of children who do not have genetic conditions. We are creating a registry of potential participants for future studies.
If you are interested in being included in the registry and being contacted for participation in future research studies, we will ask you for your eligible children’s names, dates of birth, and gender and your contact information including name, address, email, and phone number. We will also ask about your education and occupation. You will have the option to opt out of participating in future studies when contacted.
If you agree to include your child in this registry and potentially be contacted by a member of the Child Neurodevelopmental Lab for participation in future studies, please access the survey link for participation in the registry and for more detailed information: Survey Link
