Celebrating 35 Years

Looking for Participants for Study About Reading in NF1

The Education and Brain Sciences Research lab at Vanderbilt University is seeking participants for a new research study! The purpose of the study is to understand more about children and young adults with Neurofibromatosis Type 1 (NF-1) who also have difficulty with reading. People with NF-1 sometimes have trouble learning to read, and we would like to know more about the best ways to treat these reading difficulties. This study is to evaluate the effectiveness of a medication called Lovastatin and reading interventions in treating reading difficulties in children with NF1.

Purpose

The purpose of the study is to understand more about children and young adults with Neurofibromatosis Type 1 (NF1) who also have difficulty with reading. People with NF1 sometimes have trouble learning to read, and we would like to know more about the best ways to treat these reading difficulties. This study is to evaluate the effectiveness of a medication called Lovastatin and reading interventions in treating reading difficulties in children and young adults with NF1. There will be four different groups. Two groups will only have people with NF (called “NF Groups”), and two groups will only have people without NF (called “RD Groups”).

1: NF Group: Reading tutoring program and a medication called Lovastatin

2: NF Group: Reading tutoring program and no Lovastatin (placebo)

3: RD Group: Reading tutoring program and no medication

4: RD Group: No reading (sham) tutoring and no medication

Your child will be assigned randomly (like a flip of a coin) to one of the NF groups. You are being asked to allow your child to join the study because your child has Neurofibromatosis Type 1. Lovastatin is not approved by the Food and Drug Administration for the treatment of reading trouble due to Neurofibromatosis Type 1.

We will enroll a total of 120 people with and without NF1 between the ages of 8-20 years’ old

Who can participate?

Individuals ages 8 to 20 with Neurofibromatosis Type 1

What does participation involve?

Children will participate in four Magnetic Resonance Imaging Scan (MRI) and behavioral testing sessions as outlined below; specific tests and MRI procedures. Note that to minimize fatigue, testing for Visits 1 and 3 will be over two days, approximately 3-4 hours each day. Children will receive 20 mg Lovastatin for 2 weeks and then 40 mg Lovastatin for the remaining 11 weeks.

Group Visit 1 12 weeks Visit 2a 5 days interval Visit 2b 12 weeks Visit 3

NF Group: Lovastatin+

Reading Tutoring

Behavioral Testing & MRI Lovastatin Behavioral Testing & MRI Reading tutoring; continue Lovastatin Behavioral Testing & MRI No treatment Behavioral Testing & MRI

 

NF Group: Placebo+

Reading Tutoring

Behavioral Testing & MRI Placebo Behavioral Testing & MRI Reading tutoring; continue placebo Behavioral Testing & MRI No treatment Behavioral Testing & MRI
Benefits

The benefits to science and humankind that might result from this study. We may learn something that will help other children with reading difficulty, with and without NF1, someday.

Your child may directly benefit from either study medication, tutoring program, or both if assigned to that condition. We do not know for certain if being in this study will help your child.

Compensation
  • Travel reimbursement available for NF-1 families living outside middle TN area for airfare and hotel
  • Check for $150 for the first visit, $750 for the second visit, and $150 for the last visit
  • Report of child’s performance on assessment measures (if first visit is completed)
Where?

Vanderbilt University located in Nashville, TN

When?

Study visits take place Monday through Friday. Funding provided, we will be enrolling participants over the next 3-4 years.

Contact information

Education and Brain Sciences Research Lab
(615)875-5534

Study Flyer

Please follow and like us:

Comments (6)

  • Hi my name is Emily Reed I live in Canada Alberta I have enough one I have a very mild case of an app one I come from a big family of NF one and major complications I seem to have only six café au lait spots but I have severe body pain and nobody seems to know why or they don’t seem to care about an app or they are not educated enough so I’m on the site looking in it seems to be the site to be on it maybe could help me answer some of these questions

  • I have a son turning 19 can not read very many words he memorized the ones he does know but we are from Parkersburg wv he has NF1 anyway is this meds supposed to help with reading is it something he would be good for ?

    • Gina Lee, Yes he may be eiligible for this study and it may help you learn more. You’d have to contact the study coordinator.

    • Deborah, There are some great NF groups in Europe for you to reach out to. They may have more happening than you know.

Leave a Reply

Your email address will not be published. Required fields are marked *

9 − two =

<< View More

Get the Latest NF News & Updates

Sign up for our blog and always be up-to-date with Neurofibromatosis


Follow by Email
Facebook
Facebook
YouTube
LinkedIn