Cerebral Palsy Research Network Blog

Cerebral Palsy Diagnosis Data Elements Completed

The non-surgical clinicians subspecialty group finished their initial data element definition on Thursday, July 2, 2015. The group, led by CPRN network leader Dr. Garey Noritz, Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, consisted of Dr. Noritz and twelve clinicians who treat CP around the nation including:

  • Dr. Jan Brunstrom-Hernandez, 1 CP Place
  • Dr. Nancy Clegg, Texas Scottish Rite Hospital for Children
  • Dr. Mauricio Delgado, Texas Scottish Rite Hospital
  • Dr. Laurie Glader, Boston Children’s Hospital
  • Dr. Ed Hurvitz, University of Michigan
  • Dr. Aga Lewelt, University of Florida
  • Dr. Michael Noetzel, Washington University
  • Dr. Gadi Revivo, Rehabilitation Institute of Chicago
  • Dr. Angela Sinner, Gillette Children’s Hospital
  • Dr. Richard Stevenson, University of Virginia
  • Dr. Jilda Noel Vargus-Adams, Cincinnati Children’s Hospital
  • Dr. Amy Viehoever, University of California San Francisco

The group has met consistently every other week since April 23rd to define the important data to collect for the cerebral palsy diagnosis within a clinic setting. Starting from other established registries, the group focused on leveraging best practices in the diagnosis and determining how to make sure that fields could be reliably recorded across a diverse number of centers and clinicians. The diagnosis core of the CPRN registry will be a critical feature for the future study of cerebral palsy.

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