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Individuals ages 8-20 with and without Neurofibromatosis Type 1 needed for research study on reading disabilities

The Vanderbilt University Education and Brain Sciences Research Laboratory (EBRL) is seeking individuals between the ages of 8 and 20 years old, with or without a diagnosis of Neurofibromatosis Type 1 (NF-1), for a research study that seeks to learn more about how children and adolescents who struggle with reading can learn to become good readers.

The purpose of the study is to understand more about children and young adults with NF-1 who also have difficulty with reading. People with NF-1 sometimes have trouble learning to read, and the EBRL would like to know more about the best ways to treat these reading difficulties. This study evaluates the effectiveness of a medication called Lovastatin and reading interventions in treating reading difficulties in children and young adults with and without NF1.

For individuals with NF-1 or families of children with NF-1:

Interested participants will be interviewed over the phone (30-45 minutes) to determine if they are a good candidate for the study. Involvement in the study includes the following:

  • Comprehensive evaluation of reading-related skills at Vanderbilt University;
  • Four magnetic resonance imaging (MRI) scans of the brain; and
  • Parent and teacher questionnaires.

If you or your child meets study criteria for having problems with reading, you or your child may be invited to participate. Participants with NF will be randomly assigned to one of two different groups:

  1. Reading tutoring program and a medication called Lovastatin
  2. Reading tutoring program and no Lovastatin (placebo)

Note: Lovastatin is not approved by the Food and Drug Administration for the treatment of reading trouble due to Neurofibromatosis Type 1.

Individuals with NF-1 and their families who participate in this study will receive:

  • Travel reimbursement (for families living outside Middle Tennessee area)
  • Compensation for each visit, reflective of time commitment:
    • First visit: $150 (issued via e-gift card)
    • Second visit: $750 (issued via check)
    • Third visit: $150 (issued via e-gift-card)
  • Report of child’s performance on assessment measures (if first visit is completed)

For individuals without NF-1 or families of children without NF-1:

Interested participants will be interviewed over the phone (30-45 minutes) to determine if they are a good candidate for the study. Involvement in the study includes the following:

  • Comprehensive evaluation of reading-related skills at Vanderbilt University;
  • Four magnetic resonance imaging (MRI) scans of the brain; and
  • Parent and teacher questionnaires.

If you or your child meets study criteria for having problems with reading, you or your child may be invited to participate. Participants will be randomly assigned to one of two different groups:

  1. Reading tutoring program
  2. No reading (sham) tutoring program

Individuals without NF-1 who participate in the study will receive:

  • Compensation for each visit, reflective of time commitment:
    • First visit: $150 (issued via e-gift card)
    • Second visit: $100 per day, up to $500 (issued via check if over $300)
    • Third visit: $150 (issued via e-gift card)
  • Report of child’s performance on assessment measures (if first visit is completed)
  • A picture of your child’s brain as a keepsake!

The study is sponsored by the National Institute of Child Health and Human Development, National Institute of Health.

For more information, or to indicate interest in participating, contact the Education and Brain Sciences Research Lab at (615) 875-5534 or educationbrain@vanderbilt.edu.