MyCP is a patient powered registry for cerebral palsy that is part of the Cerebral Palsy Research Network (CPRN). Let’s tease that apart. First, it is a registry or a database of people with cerebral palsy or their caregivers. Registries are important tools for conducting research. MyCP is focused on patient-reported outcomes — as opposed to the outcomes that doctors record clinically after an intervention like surgery or medication. But MyCP will also connect people with CP to researchers if they want to be considered for involvement in studies. Your information is private and it is only released to researchers if you agree to release it.
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