Setting a community-centered research agenda
Attendees from cerebral palsy community meet with clinicians and researchers to discuss the most important research questions.
Annual CP Research Network Investigators’ Meeting
Clinicians, researchers and community members gather annually to advance cerebral palsy research.
MyCP Promotes Extended Community Interactions
Participation in research, discussions, research priority setting, and shared lived experiences make MyCP an invaluable platform for the community.
MyCP
Join in discussions
Participate in discussions about lived experiences, pressing research questions, and the latest evidence based medical treatments.
ParticipateImpact research
Take surveys from your PC or mobile device to help advance cerebral palsy research. Make a difference!
ParticipatePersonalized Resources
MyCP can help you be prepared for doctors and therapists. For example, see why the learning about the GMFCS is so important.
MyCP Community Registry Studies
By participating in the MyCP registry, community members may help researchers understand their experience of living with CP by completing research surveys. MyCP surveys are designed with the help of our community advisors working alongside CP researchers.
The following series of questions will ask about things such as how long you went to school, how you move around and communicate and the status of your health. We will also ask about the way you feel, if you have pain, and if you had surgery as a child. We are particularly interested in your viewpoint on whether you think people have treated you differently as a result of having cerebral palsy.
The following series of questions will ask you about your pain, where it is, how bad it is, what makes it feel better and how it has impacted your life. We will also ask you about what treatments you have done, what worked, and if you use opioids.
The following series of questions will be asking you about how you move your arms and legs, if you use equipment to move, and if you are satisfied with your movement.
People with cerebral palsy may sense the world around them differently (including with the senses of touch, taste, smell, vision, and hearing). We would like to know how the person in your life with cerebral palsy (either yourself or your loved one) senses the world around them and how this might be associated with that person's functional abilities and any unintentional movements they may have. It is important for us to understand what, if any, sensory concerns people with cerebral palsy may have. IMPORTANT NOTE: If you complete this survey you will see an erroneous value for the number of items completed and you may receive emails saying you are incomplete. Please ignore these messages.
Better understanding the physiological and psychological consequences of falls is relevant to the cerebral palsy (CP) community and stakeholders because frequent trips and falls are common occurrences reported by patients and families. Learning what activities or conditions contribute to falls, how individuals fall, resulting injuries, and conscious behavior modifications due of falls can improve exercise recommendations and psychology referrals (e.g., for fall anxiety, activity avoidance), provide empirical numbers to enhance clinical awareness, and help us create tools and opportunities for safer community participation
