New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

CPRN Epilepsy Study Group’s First Meeting a Success

CPRN Epilepsy group

The epilepsy study group (pictured below; left to right) includes Dr. Erin Fidak-Romanowski (University of Michigan), Ashley Falke (NCH research coordinator), Dr. Ostendorf (NCH), Dr. Howard Goodkin (University of Virginia), Dr. Erica Axeen (University of Virginia) and Dr. Krista Eschbach (Children’s Hospital Colorado)

Did you know that there are a lot of co-morbidities with cerebral palsy? One is epilepsy. The Cerebral Palsy Research Network’s (CPRN) epilepsy study group’s first meeting occurred in New Orleans during the American Epilepsy Society meeting in December 2018. Our group of seizure experts is supported by a generous grant from the Pediatric Epilepsy Research Foundation (PERF).

Seizures occur in around half of children with cerebral palsy, yet little is known regarding the best way to treat both the seizures and CP . This newly-formed study section aims to build on the foundation of the CPRN through enhancing the information collected during clinic visits. This information will be used to identify risk factors and successful treatment for seizures. The study section will use this information to develop the next generation of treatment options for children both conditions.

At this meeting, the group discussed the current information collection tools and how best to use them at each center within the CPRN. They planned next steps, including measuring the impact of seizures and CP on patient and family lives and disseminating cutting edge information rapidly throughout the network. The study group members will continue their collaboration through scheduled phone calls and meet again in person in the Spring.

Dr. Adam Ostendorf, a pediatric epileptologist at Nationwide Children’s Hospital (NCH), leads the investigator team and feels tremendous momentum moving forward. “We had a fantastic meeting this year. The discussion was energized by the clear passion of the members. Contributions were forward thinking and demonstrated the potential for the CPRN to change how we care for children with seizures and CP.”

CPRN and CP NOW Foundation Receive PCORI Conference Award

Conference will establish patient-centered research agenda for cerebral palsy

The Cerebral Palsy Research Network (CPRN) and its partner, CP NOW Foundation, received exciting news that their joint grant application to Patient-Centered Outcomes Research Institute (PCORI), requesting $50,000 to host a workshop to bring together people with CP, parents/caregivers, and researchers from all over the country, was approved for funding!

CPRN and CP NOW Foundation

Partners in research for cerebral palsy

The planned meeting is an important step to allow the organizations to discuss research priorities in depth and set the goal for the future direction for CP research that will best benefit the CP community from multiple perspectives.

The conference grant supports four activities to accomplish this goal:

  1. Conduct a series of online webinars to educate patients, caregivers and clinicians about patient registries, clinical trial design and comparative effectiveness research, and quality networks;
  2. Collectively build and distribute a survey for the broader patient and provider community to provide input into the research priorities for CP;
  3. Convene a meeting to synthesize the survey data, set a comparative effectiveness research (CER) and quality agenda and establish an engaged team of patients, clinicians and stakeholders;
  4. Publish a whitepaper outlining the broader community’s shared clinical comparative research and quality agenda for cerebral palsy.

The differentiator that will hopefully set this apart from other CP research efforts is that it will include the voices and perspectives of ALL members of the CP community: people with cerebral palsy, parents, caregivers, clinicians and researchers. This collaborative approach will allow for a meaningful and targeted research agenda to improve outcomes for people with CP.

Want to participate? Sign up for CPRN alerts to get the details!