The Columbia University research project “Cognitive Skills in Boys with Muscular Dystrophy,”has been privileged to work with over 250 families, all of whom have been generous with their time and insight. We are grateful to all our participants for their invaluable contributions to our research. We hope our work can be of benefit to families living with DMD/BMD. The study, run by Veronica J. Hinton, Ph.D. a developmental neuropsychologist and Associate Professor at Columbia University, has been supported by both the National Institutes for Child Health and Development and the National Institute for Neurological Diseases and Stroke, as well as the Muscular Dystrophy Association. Thanks to them, and mainly thanks to the help of all of our research participants, we have made tremendous gains in understanding the learning profile of children with DMD.
What We Study
We examine language skills, nonverbal skills, memory, and
academic skills. Then we look to see how the children
do relative to other children their age. We compare their
responses of the children with DMD or BMD to their
unaffected siblings’ responses, to try and take into account home environment and family effects. We also compare their responses to responses from children with cerebral palsy, to try and take into account their physical disabilities. We examine how the boys with DMD and BMD do on all the tests to determine what areas are strengths for them and what areas are weaknesses.
We also look to see if there is any relationship with the type of genetic mutation they have and how they do on the cognitive measures.
What We Have Done
We have worked with over 225 boys diagnosed with DMD or BMD and have presented our findings at numerous scientific and parent-oriented meetings. We have published papers detailing our results. The work is the most detailed investigation of cognitive effects associated with DMD that has ever been reported.
Our research has shown definitively that children with DMD develop many cognitive skills appropriately and similarly to their peers. Yet, they also are at risk for having a specific type of cognitive problem, and we believe that it is due to the missing dystrophin products in the brain.
What Can You Do
We’d like to continue to work with as many children with
DMD/BMD and their siblings as possible. We are
interested in working with children who are anywhere
from three to seventeen years old. For those of you
who have participated and /or continue to participate,
we are extremely grateful to you and your kids for your time and effort. And for those of you who would be interested in participating, we would be delighted to have you help out! Your involvement will help us all learn ways to help children with DMD and BMD.
Participation is completely voluntary. We ask children who have been diagnosed with either DMD or BMD and their unaffected siblings to spend a few hours with us answering questions and taking paper-and-pencil and computer tests. Their parents are asked to fill out questionnaires. We also ask for blood samples from the participant which will then be sent and sequenced by Dr. Kevin Flanigan from the University of Utah and his team will send you a report of what they find.
Most kids enjoy the day, and we try our best to make it fun. The kids receive small toys and gift certificates for their help, and parents are reimbursed for their travel and parking costs. If you’d like a written report describing how your child did, we are happy to provide that too.
We have also composed a small coloring book so your child can understand what is expected at the testing appointment. Here is a link so you can download the coloring book and print it.
DMD Project at Columbia University