Chicago, IL
Renaissance Chicago Downtown Hotel
Oct. 2-3, 2017

Building a Cerebral Palsy Patient Registry: Best Practices and Lessons Learned

October 2, 2017
2:50pm - 3:20pm

In September 2012 after two years of development, Nemours hospital implemented a cerebral palsy patient registry that now includes more than 10,000 patient events. The organization built the registry to interface with its EHR to better treat a medically complex patient population with multiple procedures that require observation over time. 

The registry’s primary purpose is not for research but to align clinical operations and care coordination by helping to eliminate paper, redundant data entry, and to streamline the care process for both patient and caregiver. 

In this session, Nemours will explain how the registry works and share best practices and lessons learned for attendees considering a similar project.

Key takeaways:

  • Understand how whatever you build will affect all users - providers, patients and staff - in understanding patient experience.
  • The importance engaging all patients, parents, providers and staff in the development of the registry.
  • Understand and adapt to resources available in the development of a registry.



Kenneth Rogers

Program Manager - Orthopedic Research
Nemours Alfred I. duPont Hospital for Children

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