PARENTS OF YOUNG CHILDREN WITH NEUROFIBROMATOSIS-1

 

HELP US LEARN MORE ABOUT

THE EARLY DEVELOPMENT OF CHILDREN WITH NF-1

 

 

Purpose:

We are interested in learning more about the social, cognitive, and emotional abilities of young children with Neurofibromatosis-1. Previous research with older children has shown that some older children, adolescents, and adults with NF-1 have learning, attention, and emotional difficulties. There is very little information available about very young children.

Who can participate?

Children between the ages of 2 and 8 who have been diagnosed with NF-1 or who are showing some symptoms of NF-1. If your child has a sibling without NF-1, he or she is also invited to participate.

What does participation involve? 

Participation takes up to 3 hours. The researcher will play games with your child to look at reasoning, expressive and receptive language abilities, patience, and reaction to mild frustration. You will be asked to complete questionnaires about your child’s behavior, emotions, temperament, and attention and will be interviewed about your child’s behavior and daily functioning. All sessions will be videotaped.

Benefits

Your child will 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 WisconsinMilwaukee, where we have the dedicated quiet space and the necessary electronic equipment.

When? Sessions can take place during the week (day or evening) or on weekends.

 

To participate, please contact the Child Neurodevelopment Research Lab at the University of WisconsinMilwaukee at (414) 229-2586. We look forward to hearing from you!

Study Title: Early Indicators of Emotional, Learning, and Cognitive Difficulties in Neurofibromatosis-1

Protocol #: 07.02.179

Approved: 02/07/2008 – 2/06/2009