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NF1 Study Looking for Children Ages 4 to 6

Attention, parents of children (ages 4-6) with neurofibromatosis Type 1, help researchers learn more about your child’s attention abilities!

Purpose

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.

Who can participate?

Children between the ages of 4 and 6 who have been diagnosed with NF1 and speak English as their first and primary language.

What does participation involve?

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 video recorded.

Benefits

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.

Where?

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.

When?

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 study is funded by NF Midwest

STUDY FLIER

Comments (4)

    • Hi Teresa. I believe we were trying to connect you with other people from your area. Have you been able to meet others? Also, have you signed up for the new patient portal through tinyurl.com/NFhello? It’s a small community now, but it will be a great way to meet others and collect data.

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