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The Cerebral Palsy Research Network is a 501(c)(3) nonprofit organization with a mission to improvement the lifelong health and wellbeing of people with cerebral palsy (CP) and their families through high quality research, education and community programming. The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. It hosts the largest community and clinical registries in the United States to gather robust and comprehensive data for clinical research.

History
The CP Research Network was founded out of the 2014 National Institutes of Health meeting on the State-of-the-Science and Treatment Decisions in Cerebral Palsy Workshop 2014. A task force that included a number of workshop participants was created out of the meeting to explore the creation of a national CP registry. The network was established by members of this task force led by Paul Gross, a former Microsoft executive and parent of a child with CP. Mr. Gross had co-founded two prior clinical research networks for hydrocephalus (hcrn.org and ahcrn.org). At the workshop, Gross met Dr. Garey Noritz, a developmental pediatrician and internal medicine clinician from Nationwide Children's Hospital (NCH) which had build a single center registry built into the hospital's electronic medical record system (EMR). The concept of building a registry where data was entered as part of usual clinical care became a central thrust of the network.

Defining the registry
NCH and Dr. Noritz played a leadership role in defining the network's EMR based registry. Mr. Gross recruited leaders in orthopedics (Unni Narayanan, MBBS), neurosurgery (W. Jerry Oakes, MD), and physical therapy (Amy Bailes, PT, PhD). The registry was defined in 2015 with multiple stakeholders participating in the definition of the registry elements. The registry was defined in REDCap and the Epic EMR simultaneously. The REDCap implementation and centralized registry were hosted at the University of Utah's Division of Health Systems Innovation Research under Susan Horn, PhD and Jacob Kean, PhD. The Epic EMR forms were developed by NCH and shared with other sites through Epic. The registry went live in 2016 at NCH. Mary Gannotti, PT, PhD and Deborah Thorpe, PT, PhD organized a group of physicians that treat adults with CP to validate the registry elements for characterizing the adult population.

Establishing the network governance
The founding member organizations, included:
 * 1) Nationwide Children's Hospital
 * 2) Children's of Alabama
 * 3) Cincinnati Children's Hospital and Medical Center
 * 4) CP NOW
 * 5) Hospital for Sick Children
 * 6) University of Hartford
 * 7) University of Utah

Each institution provided a volunteer leader to help set the strategy and governance of the network by forming a steering committee that met monthly to advance the network infrastructure, membership and research priorities. The steering committee invited 16 centers to join the network in 2016 to implement the registry and help shape the standard operating procedures.

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The steering committee determined from the outset that the network's research should follow a patient-centered research agenda. In 2017, the CP Research Network partnered with CP NOW to be granted an engagement award from the Patient Center Outcomes Research Institute.

Partnership with CPARF
The Cerebral Palsy Research Network is a nonprofit organization that is seeks to optimize the lifelong health and wellness of people with cerebral palsy (CP) and their families through education, high quality research and community programming.

The CP Research Network engages physicians at hospitals in the United States and Canada that treat people with CP and members of the CP community to determine the most pressing problems to be addressed through clinical research and quality improvement. To facilitate its research, hospitals capture patient data from usual care into a registry that forms the basis for network research. This patient data is stored in the hospitals' electronic medical records (EMR) system and then transferred to the CP Research Network's Data Coordinating Center (DCC) at the University of Pittsburgh. As of May 2023, 30 hospitals across the US and Canada are participating in the network of which 18 are contributing data to the registry.