The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with cerebral palsy (CP). The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.
The mission of the Cerebral Palsy Research Network (CPRN) is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.
The Cerebral Palsy Research Network (CPRN) decided to increase its investment in knowledge translation following its annual investigator last week. For CPRN, to “translate knowledge broadly” means to reduce practice variation by implementing best practices and evidence-based medicine across the 26 sites in its network. Reducing practice variation has been demonstrated to improve outcomes which is central to the mission of CPRN. By tackling this in a whole network fashion, CPRN expects to improve outcomes for a broad population of people with cerebral palsy (CP) in North America.
CPRN held a modified version of its annual investigator meeting last week. Originally planned to be an in-person meeting of more than 40 investigators prior to the COVID-19 pandemic, last week’s meeting was attended by more than 50 investigators from more than 30 institutions via Zoom. Review of CPRN’s five-year strategic plan highlighted the need to invest more in knowledge translation. CPRN will pursue transforming its network into a learning health network – an established model for rapidly improving health care outcomes for a variety of diseases and conditions.
Peter Margolis, MD, PhD
CPRN hosted Peter Margolis, MD, PhD from Cincinnati Children’s Hospital as a guest speaker and an expert on building Learning Health Networks. His presentation sparked an enthusiastic dialogue amongst investigators to establish new quality improvement initiatives including adult care for CP, hip surveillance and dystonia in addition to our existing initiative for intrathecal baclofen pumps. CPRN’s adult care initiative, led by CPRN Exec Committee member Ed Hurvitz, MD, has already begun planning the new initiative to improve treatments and outcomes adults with CP. The other initiatives will establish leaders and working teams in the coming weeks. CPRN expects its increased investment in quality improvement initiatives will build on its cerebral palsy registry, complement its research efforts and accelerate the improvement in outcomes for people with CP.
The Cerebral Palsy Research Network (CPRN) welcomed Akron’s Children’s Hospital to the network and Micah Baird, MD, a pediatric physical medicine and rehabilitation physician, as its principal investigator. Akron Children’s Hospital is the 26th site to join the network and expands the network’s footprint into northeastern Ohio. The ongoing care for children with cerebral palsy (CP) occurs primarily in the NeuroDevelopmental Science Center at Akron Children’s Hospital and includes clinicians from pediatric rehabilitation medicine as well as developmental pediatrics, neurology, neurosurgery, psychology, and neuropsychology. The hospital system has cared for 1,961 people with CP in the last year so their participation in the network will substantially increase the patient data included in the CPRN CP registry.
Akron Children’s Hospital has been very agile in getting the CPRN CP Registry up and running in its practice. Patient data from clinical visits for CP will be de-identified and transferred to the CPRN Data Coordinating Center at the University of Utah. This agility allows Akron Children’s to participate in the generation of new evidence and quality initiatives to improve outcomes for people with CP and strengthens the CPRN CP Registry with a larger population and treatment history.
The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom. Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry. This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.
Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy. Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients. But little research has been conducted on this unique population. Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research. The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.
Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!