Early Detection of Cerebral Palsy

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Two and half years after the Cerebral Palsy Research Network was founded, the Cerebral Palsy Alliance published a seminal manuscript on the Early Detection of Cerebral Palsy. The systematic review, authored by CP Research Network Scientific Advisor Dr. Iona Novak, demonstrated that in a large percentage of cases, CP could be accurately diagnosed at six months of age rather than the typical 12 to 24 month diagnosis. This finding lend to a wide range of studies to determine if outcomes could be improved by intervening earlier than the typical diagnosis age to take advantage of neuroplasticity and function. The CP Research Network’s clinical registry had been launched 18 months earlier and was focused on the enrollment of children at the typical age of 12 to 24 months. In 2022, a prominent researcher in Early Interventions for CP, Dr. Stacy Dusing, sought to enroll patients for her study from the CP Research Network. Since the network had not been enrolling patients until they reached a CP clinic at their hospital, we were not in a position to collaborate with Dr. Dusing. The network set out to establish an Early Detection program. In 2023, we partnered with the Cerebral Palsy Foundation to pilot the early detection and entry of patients into our clinical registry at three sites — Seattle Children’s Hospital, St. Louis Children’s Hospital and the University of Virginia. After a successful 18 month quality improvement initiative with these sites, the network is launching a comprehensive program to improve early detection programs across all sites in the network.

Quality Improvement and the Registry

The network has extended its partnership with the CP Foundation and created multiple initiatives to support the implementation of early detection and early intervention programs. These efforts include:

  • Early Detection Steering Committee
  • Early Detection Registry Task Force
  • Three Early Detection Quality Improvement communities

Early Detection Steering Committee — This group of leaders consists of leading centers in the area of early detection that are both members of the CP Foundation Early Detection network and/or the CP Research Network as well as leaders in the field including CP Foundation Executive Director Rachel Byrne and Dr. Stacy Dusing from University of Southern California.

Early Detection Registry Task Force — This group of sites that have active early detection programs are working to ensure that critical clinical care and decision making data points are included in the CP Registry. This group is lead by Dr. Lisa Letzkus of UVA and Dr. Patrick McPhee of the CP Research Network.

Three Early Detection Quality Improvement communities — Members of the Early Detection Steering Committee evaluate site readiness and training to group sites into one of three categories for quality improvement and research:

  1. Advanced — consisting of steering committee sites and other leading ED sites
  2. Intermediate — consisting of sites that have established a program but benefit from a community of practice advancing QI plan, do, study and act (PDSA) cycles guided by members of the steering committee.
  3. Emerging — consisting of sites that have trained on the essential elements of ED like the General Movements Assessment (GMA) and the Hammersmith Neurological Exam (HINE) but benefit from a community of practice engaging in QI to get baseline data and improvements in ED processes in place.