Next month’s MyCP webinar will focus on a new study that we are conducting to establish priorities in research about adults with cerebral palsy (CP). The webinar will be held on Wednesday, December 6 at 8 pm ET. It will be led by CP Research Network principal investigator Cristina Sarmiento, MD. Dr. Sarmiento and her colleagues Jocelyn Cohen, JD, Mary Gannotti, PT, PhD, and Ed Hurvitz, MD, will present their plans for a study that was funded by our new Accelerator Award program made possible by our partner Cerebral Palsy Alliance Research Foundation.
In 2017, the CP Research Network was funded by the Patient-Centered Outcomes Research Institute to engage the community in creating a patient-centered research agenda. The program included a series of educational webinars followed by a collaborative idea generation process. This led to the creation and ranking of the most important questions to study in CP. A group of 45 people split between community members and physician researchers, gathered in Chicago in June 2017 to finalize the agenda. That agenda referred to as Research CP, was published in 2018 and has been a key driver of research conducted within the network. Many of the top-ranking themes were about adults, aging, functional decline, pain, and exercise to maintain functional abilities. This new study will again engage the community but in a different format that leverages focus groups to dive deeper into the research questions that underlie the themes that have been identified and prioritize them for clinical study.
This upcoming webinar will provide an overview of the planned study and discuss how members of the community can engage in the process. We will leave a significant amount of time for questions and answers with the entire study team. If you are interested in joining us, you must register in advance (though MyCP Webinar subscribers will automatically be sent the link to join the webinar). The webinar will also be recorded and posted to our YouTube channel within 24 hours.