The National Institute of Neurological Disorders and Stroke (NINDS) closed its public comment period on its latest Cerebral Palsy (CP) Common Data Elements (CDEs) and has now adopted a modified version of the CP Research Network’s orthopedic Registry Elements. These CDEs are intended to standardize the types of data collected for research in neurological conditions to foster data sharing and broader discovery. The CP Research Network developed data elements for orthopedic assessments and surgical procedures as part of the definition of its national registry in 2015. The adoption of these orthopedic data elements establishes a significant basis for research collaboration, as the CP Research Network registry is actively collecting data at more than fifteen sites in North America.

“The CP Research Network’s contribution to the NINDS’ CP CDEs is very important for accelerating neurological research,” said Dr. Walter Koroshetz, director of the NINDS. “Harmonizing data with large national registries like the CP Research Network’s enables more discovery and benefits the research community,” he continued.

The CP Research Network’s registry was developed in parallel with the NINDS’ CP CDEs, but it included data definitions for orthopedic and neurosurgical procedures common for CP from the outset. After the initial version of the NINDS’ CP CDEs were released, NINDS invited Paul Gross, president and CEO of the CP Research Network, to join the oversight committee for the CDEs. This collaboration has helped keep the CP Research Network Registry and the NINDS’ CP CDEs aligned to enable more research through the sharing of compatible data sets. The CP Research Network seeks to use the NINDS’ CP CDEs as a guideline for its registry development, but it also shares its work with NINDS.  The NINDS CP CDE team further organized and augmented the CP Research Network Orthopedic Registry Elements — changes that we plan to use to further revise our Registry Elements. The collaboration on the orthopedic elements allows this rich data definition to happen much more quickly than starting from a blank slate. The CPRN Registry Elements were initially developed and reviewed by a renowned set of orthopedic surgeons. Researchers that use the NINDS’ CP CDEs for orthopedics will be able to find additional collaborators within the CP Research Network that are already using these elements and may have significant preliminary data.

In the future, the CP Research Network intends to share its neurosurgical registry elements with NINDS. Because of the CP Research Network’s early traction in neurosurgery, its neurosurgical registry is well established and has captured a significant number of procedures since its launch in 2016. The Network looks forward to furthering its collaboration with NINDS in this important neurological aspect of CP research and interventions.