Advancing Health Outcomes: The Impact of the Cerebral Palsy Research Network

The Cerebral Palsy Research Network (CPRN) is a dynamic collaboration of hospitals and community stakeholders committed to improving health outcomes for individuals with cerebral palsy (CP). By maintaining both clinical and community registries, CPRN gathers invaluable data to advance research and inform healthcare practices. In a recent presentation to the Learning Health Sciences Collaboratory at the University of Michigan, Paul Gross, CPRN's CEO, discussed how the network is harnessing electronic health record (EHR) data for research, quality improvement, and the implementation of a learning health system.

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Gross, who has a child with hydrocephalus and CP, is a recognized leader in advancing clinical and translational research in neuroscience, particularly in relation to CP and hydrocephalus. In addition to his work with CPRN, he co-founded the Hydrocephalus Clinical Research Network, served as chair of the Hydrocephalus Association, and co-founded the Adult Hydrocephalus Clinical Research Network.

Founded in 2015, CPRN's mission is to optimize the lifelong health and well-being of individuals with CP and their families, with a focus on high-quality research, education, and community programming. Today, the network includes 35 centers, serving over 15,000 patients and nearly 3,000 community members.

One of CPRN's early initiatives was a three-month program funded by the Patient-Centered Outcomes Research Institute (PCORI), aimed at developing a patient-centered research agenda. "Our vision is to create a learning health network for CP that brings together a diverse community of stakeholders and health systems to focus research and care," said Gross. "We collect and share the lived experiences of community members and measure healthcare processes to continuously improve health outcomes in ways that matter to them."

Gross explained that building a learning health network involves integrating standardized data from routine care into EHRs, creating structured data for comprehensive analysis. "This allows us to capture a wide range of patient characteristics, treatment details, and outcomes," he said. "Our goal is to develop local registries that can be accessed to improve care at the hospital level while centralizing data into a national registry for broader impact."

The network's growth hinges on collaboration across participating sites, with data being aggregated into a single coordinating center. "Each site signs a participation and data use agreement, adhering to standard operating procedures developed collectively within the network," Gross explained. "This enables CPRN, as a nonprofit, to manage a vast collection of essential medical data, advancing us toward a true learning health network where multiple systems collaborate to share data and insights."

Gross also highlighted CPRN's research and improvement strategy, emphasizing the importance of investing in infrastructure to stimulate innovation and research across the ecosystem. "Rather than funding numerous pilot studies, we're building the infrastructure—registries, networks, and data coordination centers—that allows clinicians to explore practice variation and develop new studies," he said. "This approach balances evidence generation with the practical need to improve care and outcomes, using our data to support research and monitor improvements over time."

This model has already yielded significant results, with numerous publications and new ideas emerging from ongoing research. One example is the network's initiative to enhance pain assessment for adults with CP. "We increased the assessment rate from 24% to 90% of visits, addressing one of the top priorities in our patient-centered research agenda," Gross said. This improvement has also led to new funding opportunities for a pain classification study now entering its second year.

CPRN is also focusing on expanding its stakeholder engagement, with plans to double the size of its community advisory group to involve them in every study. "Involving the community in the research process ensures that the work we do remains relevant and impactful," Gross noted.

Finally, Gross emphasized the benefits of joining CPRN for other healthcare providers and institutions. Key advantages include enhanced knowledge sharing and improved care through the use of quality improvement methodologies. "What sets us apart is our integration of EHR data and registries into routine care, reducing reliance on duplicate data collection by clinical research assistants while linking patient-reported outcomes to clinically validated data," he said. This unique approach not only fosters better care but also strengthens the learning health network’s capacity for sustained improvement.