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

8 Years
17 Years
Open (Enrolling)
Neurofibromatosis Type 1, Reading Disabilities

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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.

Inclusion Criteria:

This study will be open to all individuals, ages 8 to 17 years, who meet eligibility
criteria regardless of race, gender, or socioeconomic status.

- The Reading Disabilities group (including those with NF-1) is defined by scoring
equal to or less than the 25th percentile on measures of basic word reading skills.

- The Control group (including those with NF1) is defined by scoring equal to or above
the 40th percentile on the average of the Letter Word Identification and Word Attack
subtests from the WJ-III.

Exclusion Criteria:

Any child, regardless of which group he/she is recruited for, will be excluded if he/she
meets any of the following criteria (determined during phone screening, medical review,
and during testing):

- is in foster care;

- previous diagnosis of mental retardation;

- known uncorrectable visual impairment;

- history of known neurological disorder (e.g., epilepsy, spina bifida, cerebral palsy,
traumatic brain injury);

- documented hearing impairment greater than 25 dB loss in either ear;

- medical contraindication to MRI procedures, if participating in MRI (including
exposure to metal and pregnancy);

- individuals known to have an IQ below 70;

- history or presence of a pervasive developmental disorder;

- during the DICA-IV parents indicate the presence of any severe psychiatric diagnoses
or pervasive developmental disorder.

Type of Study:


Study Design:

Allocation: Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Parallel Assignment, Masking: Single Blind (Subject), Primary Purpose: Treatment

Outcome Measure:

Improvement in basic reading skills as assessed by standard educational assessments (e.g., Woodcock Johnson Psychoeducational Battery - 3rd Edition; WJ-III)

Outcome Time Frame:

0, 5, 10, and 15 hours

Safety Issue:


Principal Investigator

Laurie E. Cutting, Ph.D.

Investigator Role:

Principal Investigator

Investigator Affiliation:

Vanderbilt University Special Education Department


United States: Federal Government

Study ID:




Start Date:

February 2006

Completion Date:

October 2013

Related Keywords:

  • Neurofibromatosis Type 1
  • Reading Disabilities
  • neurofibromatosis type 1
  • reading disabilities
  • NF-1
  • learning disabilities
  • tutoring intervention
  • Neurofibromatoses
  • Neurofibromatosis 1
  • Osteitis Fibrosa Cystica



Vanderbilt University, Vanderbilt University Institute of Imaging Science Nashville, Tennessee  37232-2310