The Cerebral Palsy Research Network (CPRN) is excited to have its first published research manuscript. Setting a Patient-Centered Research Agenda for Cerebral Palsy is available in Developmental Medicine and Child Neurology. And even better it is open to the public free-of-charge so that it is available to all in the CP community! Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), is a collaboration between CPRN and CP NOW, a nonprofit focused on education and research for people and families living with CP. Research CP started in March 2017 with a series of educational webinars, online polls to establish a research agenda and culminated in a face-to-face workshop in Chicago, Illinois in June 2017.

With broad participation from the extended community of people with CP, caregivers of children and adults with CP, the medical provider community, and community advocates, Research CP sought to establish a deep dialogue about what questions were most pressing that could be addressed through high-quality biomedical research. The initiative produced a list of 16 top research ideas and a wealth of other important criteria for CPRN and other clinical researchers to prioritize for future research studies. The 16 research ideas fell into four high level categories of research interest:

• Comparative Effectiveness of Interventions
• Exercise, Physical Activity and Chronic Disease Risk
• Understanding Aging
• Other topics including Pain, Neuroplasticity and Quality of Life.

You participated in Research CP. Please tell us what you think of the paper and help us get the word out to other people with CP, their caregivers and to clinician researchers.

Michele and I are planning Research CP 2.0. This will kick off with a review of the existing agenda and a discussion about how to not only move that research forward but also how to develop a more specific agenda for some of the underserved research questions. Stay tuned for details!

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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