The Cerebral Palsy Research Network Community Registry is a patient-powered registry that collects natural history and other data directly from people with CP or their caregivers. The registry data is collected using REDCap surveys which are accessed through a web portal called mycerebralpalsy.org (MyCP). MyCP allows community members to create a secure profile with basic demographic data and self reported information about their condition — type of CP, limb involvement and Gross Motor Function Classification Scale. That information is then used to provide access to surveys developed by CPRN investigators. In addition to patient reported surveys, participants may also give consent to contacted for clinical trials.
Investigators wishing to access the CPRN Community Registry data or to create studies should contact firstname.lastname@example.org. Clinicians can refer patients to mycerebralpalsy.org to sign up and participate in the registry.