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One of our organization’s goals
is to facilitate research for cerebral palsy, hemiplegia and pediatric stroke.
The research study opportunities listed are being conducted locally in Illinois and surrounding states, or can
be accessed without travel. The success of these research studies
depends on the generous donation of time by families affected by
cerebral palsy and pediatric stroke. We hope you will consider
these studies and take advantage of the opportunities to make a
difference for your children and children in the future.
If you are conducting a local research study and
would like to be included on this list, please send your information to info@cshconnections.org.
The Cerebral Palsy Research Registry
The Cerebral Palsy Research Registry is a
collaborative effort between Northwestern University (specifically,
the Department of Physical Therapy and Human Movement Sciences), The
Rehabilitation Institute of Chicago, Children's Memorial Hospital
and Evanston Hospital. We are building a database of children with
cerebral palsy whose families are interested in participating in
research studies. If you agree to be included in the registry, we
collect some general contact information as well as a brief medical
history and a few clinical measurements. The majority of this can be
collected in a phone interview, but one visit to our laboratory is
generally necessary to review informed consent with both the child
and their guardian, and to perform the clinical assessments. This
information is maintained in a protected database, and will not be
included in your medical records.
If a researcher at one of these institutions is
doing a study in which they need to recruit subjects with cerebral
palsy, they can contact us for access to the database. Once their study
has received Institutional Review Board (IRB) approval, they will
be able to search for medical characteristics required their study, and
be provided the contact information of subjects that match their
criteria. There is no obligation to participate in any of the studies
that your family is contacted about, and you can have your name listed
as inactive or removed from the registry at any time. It is the goal of
this registry to provide a path for families interested in research, as
well as giving researchers access to a pool of subjects from which to
select. For more information, please contact Theresa Sukal,
t-sukal@northwestern.edu.
Please include "CP Research Registry" somewhere in the subject
line.
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Comparison
of Anticipatory Postural Adjustments in Children with Neurological
Conditions and their non-disabled peers
The purpose of this
research is to learn how typically developing children and those with a
diagnosis of cerebral palsy or other neurological conditions organize
muscle activity before initiating catching, throwing and arm swinging
tasks. (These are anticipatory postural adjustments - made in
anticipation of the self-initiated movements that will cause potential
loss of balance.) This information may lead to more effective
physical therapy treatment assisting children with neurological
conditions to develop improved balance in sitting and standing.
If you give permission for your child to participate, he/she will be
asked to do throwing and catching tasks while sitting and standing. Your
child's ability to perform these activities or sustain his/her posture
will not be changed by participating in this study. There is no pain
associated with these activities.
I am recruiting typically developing children and children with a
diagnosis of cerebral palsy or other neurological conditions who are
between the ages of 8 - 17 years.
· The typically developing children should be able to follow verbal
directions, sit, stand and walk independently.
· The children with neurological conditions should be able to follow
verbal directions, sit, stand and walk independently without the use of
crutches or a walker.
· The children enrolled in either group should have no other diagnosed
medical conditions that would compromise their vision, neurological
status or ability to participate for a period of 60 minutes.
Prior to the data collection at UIC, a licensed physical therapist will
come to your home or meet you at UIC to administer two standardized
test: the Gross Motor Function Measure (GMFM) and the Functional Reach
Test. The scores on these tests will be released to you, at your
request, but will not become part of your child's permanent record
unless you choose to share them with your physician or therapist.
During the actual data collection at UIC, I will be recording patterns
muscle activity in the trunk and legs, speed of arm movement, changes in
body position and changes in weight bearing. To record
information, I will need to put special adhesive sensors on your child's
arms, legs and trunk muscles. Your child will sit or stand on a force
platform so that postural sway can also be recorded. Special
cables attached to his/her hips, knees and ankles joints and will be
used to calculate how the joint angles change when your child throws or
catches a ball. It will take about 20 minutes to attach the
sensors and cables and 30 - 45 minutes to perform the activities.
Each activity will be repeated 8 times, and your child will be able to
take a break between activities, eat a snack and have something to
drink.
Additionally, I would like to make photographs and videotapes to record
the movements as he/she performs the activities. Without revealing
your child's identity, these images may be used to illustrate
presentations and written papers. Your decision to allow your child to
participate is voluntary. For your participation in the study I can
provide you with a parking validation for the lot adjacent to the UIC PT
School. You child will also receive a $10.00 Boarders gift card as
a thank you for participating in the study.
The data collection site will be your home and the Harry Knecht Movement
Science Laboratory, Department of Physical Therapy, 1919 West Taylor
Street on the campus of the University of Illinois at Chicago. If
you are interested in having your child participate, please call me at
847-510-5650, and I will be happy to answer your questions or to set up
an appointment.
Gay L. Girolami, PT, MS
Pathways Center
Suite 100
2591 Compass Road
Glenview, IL 60026
Phone: 847-510-5650
Fax: 847-729-1116
Visit our website: www.pathwayscenter.org
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Language Development Project at the University of Chicago
Seeking children between the ages of 8 and
58 months to participate in a
multi-year study of language learning. University of Chicago, Department of Psychology, 5848 S.
University Avenue, Chicago, IL 60637. Telephone: (773)834-9914; Fax: (773)834-5261;
Email: language@listhost.uchicago.edu
Have you ever wondered how children learn language? Do all
children learn language in the same way? How do children communicate before they speak?
Your family can help us answer these questions and many more by being a
part of the Language Development Project. We are currently seeking families with children between the
ages of 14 and 58 months to participate in our study. Specifically, we are looking for children with
unilateral brain injury that live within a 100 mile radius of the Chicago area.
In order to help us understand how children learn and use language, we will
visit children in their homes three times per year for approximately two hours at each visit. Families
will receive $50 per home visit for participating in the study. If children are in daycare or
preschool, we will also visit them there one time per year.
If you are interested in finding out about the Language Development
Project, please contact Dr. Susan Levine at the University of Chicago by phone at (773)834-9914 or by email
at language@listhost.uchicago.edu
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Childhood Stroke Study at the University of Chicago
Seeking people between the ages of 7 to 30 years old who experienced a
stroke before age 13. Specifically, we are looking for people who have an injury to only one side of
the brain. Participants will be compensated. University of Chicago Department of
Pediatrics. Telephone: (773)834-8874; Fax (773)834-5261; Email:
strokestudy@listhost.uchicago.edu
The Childhood Stroke Study is recruiting individuals who experienced
strokes either during birth or childhood. This project aims to determine which areas of the brain are
involved in processing language following an injury to one side of the brain.
In order to help us understand how the brain re-organizes and functions
after childhood stroke, the project will use brain imaging and language assessments. Individuals will
undergo a brain scan (MRI) and two sessions of standardized tests. Participants will receive $200 for
participating in all three sessions. The project will take place at the University of Chicago Hospitals;
local travel expenses and parking will be compensated.
If interested in learning more or participating in our study, please
contact Dr. Steven Small or Dr. Peter Huttenlocher at the
University of Chicago by phone at (773)834-8874; Fax (773)834-5261; Email:
strokestudy@listhost.uchicago.edu
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Cerebral
Palsy Research at Northwestern University (Study 2)
Recruiting children 4 years of age or older with spastic
cerebral palsy to participate in a study on motor outcome
measures. Time required--1 visit.
Contact Kristin Krosschell,
PT, MA PCS at 312-908-6790 or email k-krosschell@northwestern.edu
for more information.
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Communication/Speech
Study
The purpose of this research study is to investigate how children
understand and use gestures and other cues that accompany speech.
This study requires one
visit to the University of Chicago for a 45 to 60 minute session.
We are looking for about 5 participants with a history of stroke or
focal brain injury, who are between the ages of 5 and 10 years.
Specifically we are looking for children who suffered a stroke before or
around the time of birth.
The children will be shown
videotaped scenes of actors and will be asked questions about what
happens in the scenes. Participants will receive $10 for their
participation.
If interested in learning
more or participating in this study, please contact Ece Demir at ece@uchicago.edu
or 773-834-7573.
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The Brain Imaging Center at
Washington University, St. Louis, Missouri
The
Brain Imaging Center at Washington University, St. Louis is recruiting
children and adults, ages 6 and up, who have experienced a perinatal
stroke (a stroke that occurred before, during, or just after birth) to
participate in a research study. Participants will play word games
and thinking games while researchers take MRI images of the
participant's brain.
Why is this study being
done?
We want to figure out how our brains work when we learn language.
More specifically, because children who have had strokes are often able
to develop their language abilities, we want to understand which regions
of the brain in these children contribute to this development and
compare this to children who have not experienced a stroke. This
understanding will help us figure out how the brain compensates after
having a stroke, as well as help us understand why some children do so
well, while others continue to have language problems.
What is an MRI and what will the participants do?
A MRI (magnetic resonance imager) is a large magnet. The
participant is placed into a large tube that surrounds the body, but is
open at both ends, to watch activity in the brain. There is no
injection of radiation nor does the MRI use radiation. MRI
scanners measure brain anatomy and blood flow using very strong
magnets. Measurements of blood flow indirectly tell us what areas
of the brain are being used.
Participants
will be paid for their help, and all travel expenses will be
compensated. If you are interested in learning more or
participating in our functional MRI (fMRI) study, please call (314)
362-4154 or e-mail ansleyg@npg.wustl.edu
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Database for Stroke
in Infants and Children
This multi-center
collaborative study will establish a database of information about
stroke in infants and children.
Children 0 to 18 years of age
who: 1) have had an ischemic stroke after January 1, 2003; 2) have a
history of spastic hemiplegic or quadriplegic cerebral palsy and X-ray
evidence of ischemic stroke after January 1, 2003; or 3) are diagnosed
with ischemic stroke defined by a new focal neurologic deficit lasting
24 hours or more and presumed due to vessel obstruction or narrowing may
be eligible to participate this study.
Participating children have
their medical and research records reviewed for information about their
stroke. The information is gathered and entered into an internet
database. Parents may be interviewed to obtain additional information,
if needed. No identifying information is entered into the database, so
that the child's participation remains anonymous. The resulting registry
may allow physicians to better diagnose, treat, and prevent stroke in
children, and will help in developing and conducting new clinical trials
to study this disease.
Please refer to this study by
ClinicalTrials.gov identifier NCT00084292
National Institute of Neurological Disorders and Stroke (NINDS), 9000
Rockville Pike, Bethesda, Maryland, 20892,
United States; Recruiting Patient Recruitment and Public Liaison
Office 1-800-411-1222 prpl@mail.cc.nih.gov
TTY 1-866-411-1010
For more information: Detailed
Web Page
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Children with Porencephaly,
Stroke, and Cerebral Palsy Sought for Study
Investigators
at the National Institute of Neurological Disorders and Stroke (NINDS)
are seeking children with porencephaly, stroke, and cerebral palsy for a
study of abnormal acquired and genetic coagulation factors. In the
study, researchers will measure a series of potential risk factors for
stroke that include autoimmune, inflammatory, and genetic clotting
factor abnormalities. By identifying the factors that contribute to
childhood stroke, porencephaly, and cerebral palsy, researchers hope
this study will lay the groundwork for future research projects that
will explore potential treatments.
Eligible
patients must be less than 15 years of age with a history of
porencephaly, cerebral infarction (stroke), and/or cerebral palsy and
have a diagnosis of porencephaly or stroke confirmed by computed
tomography (CT), magnetic resonance imaging (MRI), and/or Doppler
ultrasonography.
The
study consists of a 30-minute telephone interview/questionnaire and a
blood sample, and will be conducted at the National Institutes of Health
(NIH) Clinical Center in Bethesda, MD. All study-related expenses will
be paid by the NIH. The study will be carried out under testing and
safety standards of the U.S. Department of Health and Human Services.
For
more information, physicians should send a referral letter and a copy of
the patient's recent medical records to Dr. Karin Nelson or Dr. John
Lynch, NINDS, NIH, 10 Center Drive, Building 10, Room 5S220, Bethesda,
MD 20892-1447; telephone: (301) 496-1714; fax: (301) 496-2358; email:
lynchj@ninds.nih.gov
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