Studies Open to Enrollment

Evaluation of Measures of Attention for Young Children with NF1

We are interested in learning more about the psychosocial and cognitive abilities of young 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 the appropriateness of the ways we measure attention for young children. Since attention difficulties during the preschool years can be subtle, it is important to know which attention measures are most likely to show difficulties in a consistent and meaningful way. Children between the ages of 4 and 6 who have been diagnosed with NF1 and speak English as their first and primary language. Participation involves completion of two assessment visits (total of about 5 hours). The first visit takes about 3 hours, and the second visit takes about 2 hours of testing, approximately 2 months after the first session. At both visits, the researcher will complete tasks with your child to look at cognitive, attention, and executive functioning skills. You will be asked to complete questionnaires about your child’s behavior, emotions, temperament, and attention. All child sessions will be videorecorded. Families who complete both appointment sessions will receive a $50 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. It may be possible to arrange to conduct sessions at a quiet location closer to particpiants’ homes. 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. We look forward to hearing from you!

This flier briefly describes the study: NF Attention Study Flier

This research is supported by a grant from NF Midwest.

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.

See here for additional information: WSBPT Study Flier

This research is supported by a grant from the Williams Syndrome Association Grant #0110.

School-Ages Outcomes in NF1: Attention, Social, and Academic Functioning

As a follow-up to our past research examining early cognitive and behavior characteristics of young children with NF1, we are currently examining attention, social, and academic functioning in 9-13 year olds with NF1. Research on children and adolescents with NF1 indicate that many youth experience significant academic and functional impairments related to attention difficulties. In addition, more recent research has suggested that children and adolescents with NF1 are at increased risk for difficulties with social skills, social-communication, reciprocal social interaction, and repetitive behaviors. However, the current literature is limited in its impact because published studies have been based either on the use of single measures or on case reports. As such, the goal of this study is twofold. First, we are aiming to characterize preschool-age predictors of school-age academic, attention, and psychosocial functioning. Second, we are aiming to characterize children and adolescents with NF1 with regard to core diagnostic features, associated features, and predictors of ASD symptomatology. We are actively recruiting and are in the process of data collection.

 

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