The Cerebral Palsy Research Network (CPRN) advanced 12 studies during its two-day investigators’ meeting in Ann Arbor, Michigan last week. The meeting enabled study leaders to engage in deep discussions about study concepts, designs and execution with multiple medical discipline leaders across the network. Twenty-seven sites throughout the US and Canada were represented by the 36 attendees at the meeting. The format of the meeting, a series of small group breakouts and informational sessions, was a key factor in the value of the time spent working through important study decisions and directions.
“This meeting was truly inspirational,” said Laurie Glader, MD, a pediatrician from Boston Children’s Hospital. “It allowed clinicians and researchers to bring their passions about advancing research for the CP community together. Ideas from multiple perspectives were explored, reflecting the multi-disciplinary nature of CPRN along with the breadth and depth of what is possible through the network.”
The research that was discussed directly addressed ideas from the Research CP patient-centered agenda that was co-developed by CPRN and CPNOW. Study concepts under development include:
- Comparative effectiveness of medical and surgical spasticity treatments
- The effect of physical therapy dosage on outcomes after orthopedic surgery
- The role of body composition and strength in the long-term health of adults with CP
- Health care transition
- Shared decision making prior to surgical interventions.
Existing studies that are enrolling or preparing to enroll patients were another substantive topic including:
- CP genetics
- Epilepsy in CP
- Adult health, stigma and chronic pain
- Intrathecal baclofen pump quality improvement
- CPRN’s clinical registry and
- CPRN’s newly launched Community Registry accessible at mycerebralpalsy.org.
“I left this meeting knowing that the CP community’s research needs will finally be addressed in a comprehensive, strategic and meaningful way,” said Michele Shusterman, President of CP NOW and CPRN’s director of community engagement. “The commitment and passion of this group’s energy was palpable and inspiring. It won’t be long now until the answers to some of our most pressing concerns will start rolling in and lead to better care and treatment for people with CP. “
Investigators leading the efforts discussed will use the learning from this meeting to tune their study aims and implementations. The collaborations at the CPRN investigator meeting enable months of work to be completed in just a few days!