Trial Information

Neurobiology and Treatment of Reading Disability in Neurofibromatosis Type 1 (NF-1)

The most common concern of parents of children with neurofibromatosis type 1 (NF-1) is
learning disabilities (LD). Approximately one half of all children with NF-1 have LD—the
most debilitating and common of which are reading disabilities.

The purpose of this study is to determine if children with NF-1 who have reading
disabilities respond the same way—both behaviorally and neurobiologically—to specialized
treatment programs known to improve the decoding deficits in children with idiopathic
reading disabilities. The trial will also determine which intervention is best for
particular learner profiles. The overall purpose of this research is to gain a deeper
understanding of the characteristics and treatment of reading disabilities in NF-1.

In the trial, researchers will compare children with NF-1 who show weaknesses in reading to
children with reading disabilities of no known cause (idiopathic) using two different
interventions and behavioral and neurobiological measures. Both interventions focus on
teaching sound-symbol relationships, but vary in terms of relative emphasis on verbal versus
visual methods of teaching.

Scientists hope findings from the trial will advance knowledge about the best therapies for
LD in children with NF-1. And, by further refining how children with NF-1 who have reading
disabilities are similar (or different) to children with idiopathic reading disabilities,
the researchers may be able to learn if reading interventions that address areas other than
decoding will also benefit children with NF-1. Also, by understanding the similarities
and/or differences in the neuropsychological and neurobiological profiles of children with
NF-1 who have reading disabilities, and those without, scientists will be able to refine the
cognitive phenotype and neurobiological characteristics of NF-1, which will further
understanding of central nervous system abnormalities in NF-1.