MyCerebralPalsy.org (MyCP) is a resource for the cerebral palsy community — people with CP, parents and caregivers — to participate in research and discussions of research priorities in CP. MyCP connects you to the Cerebral Palsy Research Network’s (CPRN) CP Community Registry (CP-CORE). CPRN is a group doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with CP. The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols. CP-CORE is a patient-powered registry that enables a unique type of research where questions are answered by you on your computer or mobile device. CP-CORE is a secure research database hosted by the University of Utah and used by CPRN to conduct patient-reported outcomes research.
Engage in MyCP and Cerebral Palsy Research
MyCP provides a unique way for members of the community to engage in CP research. MyCP provides a forum for anonymous discussion of research priorities and questions. CPRN recently organized a group of more than 200 people from the community to share their thoughts about what were the most important research questions and improvements to care and treatment for people with CP. MyCP continues this opportunity for the community to interact with researchers to make sure the most important research is being conducted. In addition to discussions of research priorities, at your discretion, you will be able to participate in two kinds of research: you will have access to surveys on your computer or mobile device where you can provide your experience with CP and you may be contacted for participation in clinical trials.
Educate researchers about life with cerebral palsy
Clinical research takes place in a hospital setting and often misses critical parts of the patient perspective or experiences outside of the clinical setting. The surveys that may be accessed from MyCP give you a unique opportunity to educate researchers on your experience with CP. Initial surveys are focused on issues of pain and social and emotional issues for adults with CP. But as CPRN adds more surveys to CP-CORE, you will be able to contribute more of your experience and help make critical findings about life with CP.
CP-CORE will also offer reporting from its surveys so you can see how your answers compare to the rest of the community. This feature will make the educational value of MyCP a two-way street offering you new perspectives on your life experiences.
Impact CP research by revealing new findings
In addition to helping shape the research agenda for cerebral palsy, your information contributed to MyCP surveys will enable new research that is not otherwise possible. Clinical research is limited to findings about the treatments, interventions and experiences in the hospital setting. But most of life is lived outside of the hospital setting in the community. Providing patient-reported information about education, access, participation, independence, mobility, mental health, exercise and therapy are critical to understand a complete picture for living with CP for not only the person with CP but also his/her family and caregivers. Participation in MyCP is your chance to bring new discoveries to the field of CP research.