[BlindKid] Fragile X Research study announcement

Carlton Anne Cook Walker attorneywalker at gmail.com
Wed Nov 20 16:56:27 UTC 2019

The below research participant solicitation is being provided for
informational purposes only. The National Federation of the Blind has no
involvement in this research.

*Language Development in Fragile X Syndrome (FXS) Study*

We want to have a better understanding of language impairment in young
people that have Fragile X syndrome (FXS) during the time between being a
teenager and an adult.

This is a study that collects information about families at 4 different
times. First, the teenager with FXS and his/her parent will visit us at the
Vanderbilt University Medical Center in Nashville, TN. During this visit,
we will do an interview, and ask participants to complete questionnaires
and a language assessment. If possible, we will take a blood sample from
the teenage participant. Then, we will send two online surveys to the
parent participants at different times. For the last visit, the teenager
and parent will come back to Vanderbilt for a psychological testing session.

*How long will this take?*  The visits will take place over a period of 1-2
days, depending on the family preference and need for breaks. The
questionnaires sent to parents in an online survey can be done in 60-90

Participating families may be compensated up to $200 upon completion.

*Travel expenses:* If a family’s visit requires an overnight stay, the cost
of hotel and flights will be covered by the project. Meals and out
of-pocket expenses will be reimbursed at the allowable daily rate. Mileage
will be reimbursed for families who are driving.

Families interested in participating in this study should contact the
researchers at:

transitions at vumc.org

(615) 322-2943

PDF Flyer on this project


Carlton Anne Cook Walker
Attorney at Law
BEAR--Blindness Education and Advocacy Resources
Teacher of Students with Blindness/Low Vision
President, National Organization of Parents of Blind Children (NOPBC)
101 Kelly Drive
Carlisle, PA   17015
Voice: 717-658-9894
Twitter: braillemom

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