MyCP.org, a web portal supporting community engagement in research for cerebral palsy (CP), crossed the milestone of 1,000 users this past week! MyCP.org is owned and operated by the Cerebral Palsy Research Network (CPRN) to provide a place for members of the extended CP community – people with CP, parents and caregivers, advocates, clinicians and researchers – to collaborate on advancing research to improve outcomes for people with CP. Community members can interact to share experiences, advise on research priorities, or learn about existing evidence for various medical treatments. Physicians and therapists that both treat and research the condition of CP often engage in the conversation or seek community input.
MyCP provides several functions for the community including:
- Access to a private forum (identities are optional, and it is not indexed by Google)
- Participation in research via the CPRN Community Registry through surveys
- Research News about CPRN’s growing research portfolio and
- Tools, like understanding the importance of key measures, to help navigate CP diagnoses and clinical visits.
Members of the community may contribute their experiences with each other and connect with researchers seeking to understand the experiences of people with CP and partner together for advancing research. In addition to participation in research, the forum provides members with an opportunity to verify the latest evidence in support of medical and surgical treatments. For example, this week a community member sought knowledge about an orthopedic surgery and received a reply from a renown CP orthopedic surgeon within 24 hours. (Please note: that MyCP is not a place to ask for medical advice, rather it is a learning and support environment where evidence for the general population may be shared. Talk to your medical team for specific information about you or your loved one’s condition, their specific needs or to understand how existing evidence may or may not apply to your situation and goals. )
MyCP is a resource for the whole community and our programming has been generously promoted by the CP Foundation, CP NOW and UCP. CPRN thanks these organizations for the sharing our studies with the broader CP community. We look forward to reporting the results of the research back to their audiences over time.
MyCP’s community is made up predominantly of adults with CP, parents of children with CP and medical providers who treat people with CP. It also includes researchers, advocates and industry professionals. People from the community make up 80% of the participants and clinicians are 14%. Of the 813 members of the community, 58% are people with CP and 37% are parents. There is also a teen only forum. There are many active studies for the community to participate in including “Speech and Language Predictors of Participation for Children with Cerebral Palsy” for the parents of children between 4-17 and the “Adult Study of Personal Wellbeing, Pain and Stigma.” Please join the conversation and help make a difference in outcomes for people with CP!