Research
Announcement
Volunteers Needed
for a Study
WHO:
We are recruiting parents of children with
Holoprosencephaly or other brain malformations to participate in a research
study. Parents of children with a
clinical diagnosis of a brain malformation aged 2 through 17 years may be
eligible.
WHY:
This research is
being done to understand the health-related quality of life of children with holoprosencephaly
(HPE) and other severe brain malformations.
Through this and other studies, we hope to improve care and measures of treatment
effectiveness in these children and their families.
BENEFITS:
There is no direct benefit or
significant risk to you 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.
If we find new information as a result of this research or other
research in this area, we will share it with you.
WHAT:
Parents will be asked to
complete three questionnaires: the CPCHILD© assessment of quality of life, a
child health assessment, and a motor function Family Report Questionnaire. The survey questions take about 30-40 minutes
to complete. This study can be
completed over the computer, and does not require any clinic visits. You may
be part of a subgroup of parents who will be asked to complete the CPCHILD©
questionnaire again two weeks later.
HOW:
We
invite you to go to HPE QOL Study Online Survey and enter survey # 142958 to participate.
If
you have any questions about this study, please contact us for more information!
Elaine Stashinko, PhD, RN Principal
Investigator
Kennedy Krieger
Institute
443-923-9146 ; 800-873-3377
ext. 9146
RPN: NA_00048645 The reliability and validity of the CPCHILD© in children with holoprosencephaly
(HPE) or a related brain malformation.
Sponsors: Don and Linda Carter Foundation
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