| 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 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. |
