Neurobiology and Treatment of Reading Disability in NF-1
Condition: Neurofibromatosis Type 1; Reading Disabilities
MeSH terms: Neurofibromatoses; Neurofibromatosis 1; Neurofibroma; Dyslexia
Study type: Interventional

Summary: 
      The goal of this trial is to determine if children with neurofibromatosis type 1 who have
      reading disabilities respond the same way-both behaviorally and neurobiologically-to
      specialized treatment programs as children with idiopathic reading disabilities do, and to
      determine which intervention is best for particular learner profiles.
    

Detailed description: 
      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.
    

Intervention name(s): Tutoring Program I; Tutoring Program II
Intervention type(s): Behavioral; Behavioral
Intervention description(s): Tutoring Program I is a structured multi-sensory program that is designed to gradually present the range of sounds and letters with focus on accuracy of phonological concepts and application of those concepts in phrases and sentences. The instruction uses a sequenced defined lesson plan with accuracy and automaticity criteria for skill progression. A range of manipulative and kinesthetic activities is outlined to maintain learner engagement in the intensive intervention design.; Tutoring Program II is designed to teach visual and speech elements of reading separately at first, and then bring them together for maximum efficiency. The program uses the idea of teaching concepts about the structure of words. For example, students transfer the rules they have learned about one vowel or structure to another without specific instructions on the new one. Tutoring Program II incorporates pictures and activities to help remember strategies for increasing basic reading skills. Speed drills are also used for development of decoding automaticity.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Participant)
Primary purpose: Treatment
Keywords: neurofibromatosis type 1; reading disabilities; NF-1; learning disabilities; tutoring intervention