NF1 Research Open to Enrollment

Neurofibromatosis type 1 Studies Open for Enrollment

Effectiveness of a Telehealth Group for Improving Peer Relationships for Adolescents with Neurofibromatosis Type 1 

We are interested in learning about the effectiveness of a telehealth group, PEERS®, for improving peer relationships for teens with NF1. Research suggests that individuals with NF1 experience an elevated rate of social difficulties in comparison to same-aged peers. At this time, there is no treatment for social difficulties that has been investigated specifically for individuals with NF1. PEERS® for Adolescents is an evidence-based social skills intervention for motivated teens in middle and high school who are interested in making and keeping friends, handling conflicts, and rejection. Teens between the ages of 12 and 17 who have been diagnosed with NF1 and speak English as their first and primary language are eligible for our study. Participation for this study will take place virtually. Participation involves completion of one initial virtual intake session for about one hour to determine whether your teen would be a good fit for the group. After being accepted into the study, participants will attend 16 weekly 90-minute telehealth sessions over Zoom. Participation also includes completing questionnaires before the telehealth sessions begin, immediately after the last session, and 16 weeks after the last session. All sessions will be videorecorded. Teens and caregivers who complete questionnaires at the 16 week follow up will each receive $10 Amazon gift cards. To participate, please contact the Child Neurodevelopment Research Lab at the University of Wisconsin – Milwaukee at (414) 229-2586 or cnrl-peersnf@uwm.edu. We look forward to hearing from you! 

This flier briefly describes the study: NF1 PEERS Flyer_Sept 2020

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. 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.

Adolescent Outcomes in NF1: Attention, Social, and Academic Functioning

We are interested in learning more about attention, social, and academic functioning in adolescents with neurofibromatosis type 1. Research about children with NF1 during early childhood and school age has indicated difficulties across attention, social, and academic functioning. However, there is a very limited number of investigations of functioning during adolescence, with available literature generally using samples with wide-age ranges that include rather than focus on the adolescent time period. Adolescents are eligible to participate if they are between the ages of 14 and 19 years, have been diagnosed with NF1 and speak English as their first and primary language. Participation involves completion of one assessment visits (about 3.5-4.5 hours). At the visit, the researcher will complete tasks and questionnaires with the adolescent to look at cognitive, attention, executive and psychosocial functioning skills. A caregiver will be asked to complete questionnaires and a short interview about the adolescent’s behavior, emotions, attention and social interactions. All assessment sessions will be videorecorded. Adolescents who complete the assessment session will receive a $25 gift card. Caregivers will receive a $15 gift card. A summary of performance on the developmental testing measures may be requested. 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. We look forward to hearing from you!

This flier briefly describes the study: NF Adolescent Flier

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. We look forward to hearing from you!

This flier briefly describes the study: NF EEG Flier