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
Existing studies that are enrolling or preparing to enroll
patients were another substantive topic including:
“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!
Six of our presentations are built on data from our registry including:
Garey Noritz, MD, “Report from the Cerebral Palsy Research Network- 2019”
Adam Ostendorf, MD, “Epilepsy Prevalence, Treatment and Intractability in the Cerebral Palsy Research Network Cohort”
Jeffrey Leonard, MD, “A Descriptive Study of Surgical Interventions for Cerebral Palsy Patients in the Cerebral Palsy Research Network Registry”
Robert Bollo, MD, “A prospective, multi-center initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project”
Mary Gannotti, PT, PhD, “Pain experiences among aging adults with cerebral palsy: leveraging the Cerebral Palsy Research Network Community Registry for Patient Reported Outcomes”
Paul Gross and Mary Gannotti, “How to engage patients in research and garner patient-reported outcomes using the CPRN Community Registry.”
As mentioned in the blog post from February 6, 2019, we believe the CPRN registry is gaining traction to advance research in CP. We are honored to have the recognition of the scientific program committee of AACPDM and IAACD. CPRN congratulates all the investigators who will be presenting their scientific efforts and thanks all the network sites for the many contributions to the registry and CPRN’s scientific collaborations.
Happy New Year from all of us in the Cerebral Palsy Research Network (CPRN)! CPRN forged ahead in 2018 on the plans as laid out in the 2017 year-in-review blog post with numerous goals accomplished. The biggest highlights for the year included:
Two-hundred thousand dollars in funding from the Pediatric Epilepsy Research Foundation for Dr. Adam Ostendorf’s research entitled “Enhancing a Multidisciplinary Research Network for Research and Quality in Epilepsy and Cerebral Palsy.”
We also will continue to engage the broader community through a public webinar on the results of Research CP. This webinar will be linked with the launch of our community registry which will allow people with CP and their caregivers to actively participate in research through surveys on the web and mobile phones.
Our next face-to-face investigator meeting, hosted by Executive Committee member Dr. Ed Hurvitz, is planned for early May in Ann Arbor, Michigan. Several study analyses and manuscripts are planned for the year and an expanded presence for CPRN at AACPDM in Anaheim. Finally, we expect several more sites to join the network in 2019 and hence will be expanding our footprint and data collection for the clinical registry.
We would like to thank the investigators that volunteer their time to advance the work of CPRN for:
submitting protocols to their institutional review boards,
prodding information technology departments to implement the registry, and
encouraging their multi-discipline partners to participate in collecting the data in CPRN useable formats!
We also wish to thank our community advisors and the CP community for keeping us honest, staying engaged and spreading the word about the CPRN mission. We wish you all the best in 2019!