Interventions for Reading Disabilities in NF1

Description

Neurofibromatosis Type 1 (NF1) is a common genetic disorder that is associated with a four times greater risk of learning disabilities, including reading disabilities, and a deficiency of neurofibromin - a protein important in a signaling pathway that regulates learning and memory. Our previous work (NS49096) demonstrated that school-age children with NF+RD can respond to standard phonologically-based reading tutoring originally developed to treat reading disability in the general population. Combining our work with that by other researchers suggesting that a medication (Lovastatin) may counteract the effects of the deficient neurofibromin, and possibly ameliorate learning disabilities in NF1, the investigator propose to examine the synergistic effects of medication plus reading tutoring.

Conditions

Neurofibromatosis Type 1, Learning Disability, Reading Disability, NF1

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Study Overview

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Study Details

Study overview

Neurofibromatosis Type 1 (NF1) is a common genetic disorder that is associated with a four times greater risk of learning disabilities, including reading disabilities, and a deficiency of neurofibromin - a protein important in a signaling pathway that regulates learning and memory. Our previous work (NS49096) demonstrated that school-age children with NF+RD can respond to standard phonologically-based reading tutoring originally developed to treat reading disability in the general population. Combining our work with that by other researchers suggesting that a medication (Lovastatin) may counteract the effects of the deficient neurofibromin, and possibly ameliorate learning disabilities in NF1, the investigator propose to examine the synergistic effects of medication plus reading tutoring.

Neurobiology and Treatment of Reading Disability in NF1

Interventions for Reading Disabilities in NF1

Condition
Neurofibromatosis Type 1
Intervention / Treatment

-

Contacts and Locations

Nashville

Vanderbilt University, Nashville, Tennessee, United States,

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • 1. Individuals ages 8-20 (all participants)
  • 2. Documented NF-1 (NF patients only)
  • 3. If female, participant is post-menarche (NF patients only)
  • 4. If male, participant has reached Tanner Stage 2 (NF patients only)
  • 5. Participant able to swallow capsule (NF patients only, may be confirmed via swallowability test, described below)
  • 6. Participant's English is sufficient for school (all participants)
  • 7. Participant must either answer "yes" to question A, or answer "yes" to at least 2 items for questions B-D listed below:
  • 1. Child 7 years of age or less;
  • 2. known uncorrectable visual impairment;
  • 3. documented hearing impairment greater than or equal to a 25 dB loss;
  • 4. medical contraindication to MRI procedures (e.g., metal devices);
  • 5. any psychiatric, behavioral, or developmental disorder that would preclude active participation in in-depth tutoring sessions
  • 6. Pregnant at time of screening.
  • 7. Known conditions which are contraindicated to Lovastatin
  • 1. Hypersensitivity to the medication
  • 2. Uncontrolled Epilepsy
  • 3. Metabolic Syndrome X, High Blood Sugar,
  • 4. Muscle Damage Due to Autoimmunity
  • 5. Stroke caused by Bleeding in the Brain, Loss of Memory,
  • 6. Severely Low Blood Pressure
  • 7. Liver Problems including Abnormal Liver Function Tests
  • 8. Severe Renal Impairment,
  • 9. Serious Muscle Damage that may Lead to Kidney Failure,
  • 10. Recent Operation or significant Injury
  • 11. Muscle Pain or Tenderness with Increase Creatinine Kinase,
  • 12. Habit of Drinking Too Much Alcohol
  • 13. Pregnant or lactating. - Lovastatin is contraindicated during pregnancy and in nursing mothers because it decreases synthesis of cholesterol and other products of the cholesterol biosynthesis pathway that are essential components for fetal development.
  • 1. Children ages 8-17
  • 2. Participant is a native English speaker
  • 3. Participant must either answer "yes" to question A, or answer "yes" to at least 2 items for questions 2-4 listed below:
  • 1. Children 7 years of age or younger
  • 2. previous diagnosis of Intellectual Disability;
  • 3. known uncorrectable visual impairment;
  • 4. documented hearing impairment greater than or equal to a 25 dB loss;
  • 5. medical contraindication to MRI procedures (e.g., metal devices);
  • 6. known IQ below 70;
  • 7. a pervasive developmental disorder; and
  • 8. any known neurologic pathology, including epilepsy, spina bifida, cerebral palsy, traumatic brain injury, optic gliomas, and brain tumors (other than UBOs).
  • 9. Comorbid severe psychiatric disorders will also be excluded.

Ages Eligible for Study

8 Years to 20 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Vanderbilt University,

Laurie Cutting, PhD, PRINCIPAL_INVESTIGATOR, Vanderbilt University Medical Center

Sheryl L. Rimrodt-Frierson, MD, STUDY_DIRECTOR, Vanderbilt University Medical Center

Study Record Dates

2026-07