The Cerebral Palsy Research Registry
We believe that by working together, families and researchers
can make a difference in the lives of people affected by cerebral palsy.
Simple and secure registration
We believe that by working together, families and researchers
can make a difference in the lives of people affected by cerebral palsy.
Simple and secure registration
The Cerebral Palsy Research Registry (CPRR) is a multi-institutional effort that connects participants with cerebral palsy to institutional researchers and ongoing studies in a simple and secure way online. Our goal is to promote CP research across the life span.
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Children and adults with cerebral palsy are the keystone of the CPRR. You may have heard about research studies happening on the news or online, but it can be hard to know if you qualify or what other studies may be out there to chose from. By registering with us, you have the opportunity to find out more about research studies that are happening that are more likely to be relevant to you. Participating in any study that we may tell you about is always up to you – there is never any obligation or pressure. And if actively engaging in a study isn’t for you, providing some basic medical information to the CPRR can help us learn more about CP without taking more than a few minutes of your time each year. Your privacy is a priority for us and we use high levels of security to keep your data safe.
The CPRR is housed and maintained by Northwestern University, with members of the team also at the Rehabilitation Institute of Chicago and the University of Chicago. We invite other institutions to join with us in this collaborative effort to increase recruitment and research capacity at all institutions. If your University of Hospital is involved in CP treatment and research, partnering with the CPRR as a participating institution will give you easy access to the participants from your institution and indirect access to the entire CPRR database.
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The research question and ethics approval are the easy part – finding appropriate participants to complete your study can be the most challenging aspect of doing research. The CPRR is a way to engage with a large cohort of individuals that are interested in the research process and are open to hearing about the work you are doing. Individuals that are matched to your inclusion/exclusion criteria are notified about your study, opening the door for communication. Options are also available to view and analyze de-identified information from the database. Your research study must have IRB approval in order to use the CPRR for recruitment purposes.
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Whether it’s a contribution of resources, your time, or your talents, we are appreciative of the involvement of the CPRR community in our efforts.
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