| |
The Cerebral Palsy 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 in 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 email Theresa
Sukal. Please include "CP Research Registry" somewhere
in the subject line. |
