Validation of the Kennedy Independence Scales – Spina Bifida Version
Volunteers with Spina Bifida Needed for a Study
We are recruiting children and adolescents to participate in a research study. Children
and adolescents with a clinical diagnosis of spina bifida ages 10 through 21 years who
have a shunt are eligible.
This research is being done to see how well a new checklist completed by parents
measures the skills of young people with Spina Bifida. Young adults with Spina Bifida
often learn important medical skills during their teenage years. The goal of this
research is to create a quick way to see if young people with Spina Bifida are ready to
learn these important new skills.
BENEFITS AND RISKS:
There is unlikely to be any direct benefit or significant risk to you or your child from
being in this study. The primary benefit is to gain new knowledge. If you take part in
this study, you may help others in the future.
WHEN AND WHAT:
This study takes one visit to the Kennedy Krieger Institute. If your child is eligible for
the study, we will ask you (the parent) to complete three separate checklists made up
of multiple-choice questions. These checklists take about 30 minutes to finish. If your
child is a patient in the Spina Bifida Clinic, you may be able to finish them during your
child's next clinic visit. You are allowed to take the checklists home and finish them
later if you need more time. We will give you a stamped self-addressed envelope so
that you can mail them back to us. No other visits would be necessary for this study.
If you or anyone you know might be interested in participating, please contact Dr.
Zabel for more information!
T. Andrew Zabel, Ph.D.
Assistant Professor of Psychiatry and Behavioral Science
Johns Hopkins University School of Medicine
443-923-4477 RPN: NA_00002759