NINDS Funding Opportunity for Observational Trials
The Cerebral Palsy
Research Network (CPRN) congratulates the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), on its new funding opportunity announcement for prospective observational trials. CPRN was borne out of an NIH meeting entitled the “State-of-the-Science and Treatment in Cerebral Palsy”
in November 2014. That seminal meeting for cerebral palsy spurred several important efforts to advance the state of both clinical and basic science research. One of the main themes of the meeting was the need for more comparative effectiveness research using more “real world” methodologies, such as Practice Based Evidence described by Dr. Susan Horn, a professor at the University of Utah, than are typically supported by NIH granting mechanisms. Many aspects of CP require this type of study design to answer many pressing questions for the CP community.
The new funding opportunity entitled “Comparative Effectiveness Research in Clinical Neurosciences” is specifically designed to support the type of observational studies that CPRN was established to conduct. “Every year, nearly 100 million Americans and their loved ones have to cope with neurological disorders,” said Walter J. Koroshetz, M.D., director at the NIH’s National Institute of Neurological Disorders and Stroke. “We hope that this ‘real world’ approach to clinical studies will help guide patients, their caregivers, and doctors as they search for the most effective treatments for their particular disease.” The initial NIH meeting, numerous follow-up discussions and consistent Congressional Report language initiated by Reaching for the Stars were critical keys to making this funding announcement happen. CPRN plans to submit a study to NINDS using this funding mechanism.
The Cerebral Palsy Research Network (CPRN) participated in a symposium on collaborative research during the American Association of Neurological Surgery Pediatric section meeting in Nashville, TN in December 2018. Dr. Jeffrey Leonard, chief of pediatric neurosurgery at Nationwide Children’s Hospital and CPRN executive committee member, presented an overview of the work of CPRN to the general session of this annual meeting of neurosurgeons. Other networks included the Hydrocephalus Clinical Research Network, The Park Reeves Network, and the Pediatric Cervical Spine Society. Overall, there was a tremendous amount of interest in the CPRN. Audience members remarked that the network had accomplished a lot as illustrated by the number of patients entered into the registry. CPRN was differentiated by its use of the electronic medical record to garner clinical data and by its multi-discipline approach to collaborative research. Several sites inquired about joining the network and others inquired about leveraging the CPRN electronic medical record forms independent of participation in the network activities. This introduction of the pediatric neurosurgical community to the CPRN was highly successful and will hopefully generate future ideas for multi-site trials looking at surgical therapies for children with cerebral palsy.
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.”