The study team working on the PCORI application for comparative effectiveness study of surgical interventions selected 18 sites to participate in the grant application. Nearly all of the sites were selected from current participants in CPRN. Below are the site principle investigators (PIs) and the institutions that have been selected. All sites are actively working on completing site specific aspects of their participation in the study if it is funded by PCORI. The application is due to PCORI on July 31, 2015. The sites not currently participating in CPRN have been invited to join the network.
|David P. Roye Jr.
||Boston Children’s Hospital
|David A. Yngve
||Children’s Hospital of Colorado
|Deborah Gaebler/Gadi Revivo
||Rehabilitation Institute of Chicago
|W Jerry Oakes
||Children’s of Alabama
||Cincinnati Children’s Hospital
||Primary Children’s Hospital
||AI Dupont Children’s Hospital
|Unni G. Narayanan
||Holland Bloorview Kids Rehabilitation Hospital & The Hospital for Sick Children, University of Toronto
||University of Michigan
|Garey Noritz, Jeff Leonard
||Nationwide Children’s Hospital
||University of Florida Jacksonville
|Kristie F. Bjornson
||Seattle Children’s Hospital
The neurosurgery subspecialty group finished their initial data element definition yesterday. The group, led by CPRN network leader Dr. Jerry Oakes, Surgeon-in-Chief at Children’s of Alabama, consisted of ten neurosurgeons including:
- Dr. Philipp Aldana, Wolfson Children’s Hospital
- Dr. Richard Anderson, Columbia University
- Dr. Robert Bollo, Primary Children’s Hospital
- Dr. Jeffrey Leonard, Nationwide Children’s Hospital
- Dr. Michael Partington, Gillette Children’s Hopsital
- Dr. Nathan Ranalli, Wolfson Children’s Hospital
- Dr. Shenandoah “Dody” Robinson, Boston Children’s Hospital
- Dr. Brandon Rocque, Children’s of Alabama
- Dr. Charles Stevenson, Cincinnati Children’s Hospital
The group has met consistently every other week since April 28th to define the important data to collect for the primary neurosurgical interventions for cerebral palsy — selective dorsal rhizotomy and intrathecal baclofen pumps. This common data model will be an important core to the CPRN registry enabling the study of practice variation to target for quality improvement initiatives and study planning for future clinical research.
The CP Research Network investigators have been invited to submit a full PCORI application for the Large Pragmatic Studies to Evaluate Patient-Centered Outcomes – Spring 2015 Cycle which closes on July 31, 2015. Dr. Richard Stevenson of the University of Virginia is the lead Principle Investigator in the study entitled “Comparative Effectiveness of Major Surgical Treatments for Cerebral Palsy: Child and Family Reported Outcomes to Aid Decision Making.” This study, if funded, will fill a critical information gaps in the treatment of children with CP for clinicians and patient families. Children between the ages of 2 and 12 that are considered candidates for surgical interventions will be enrolled at 10 to 15 sites within the network. Site selection will be completed before the end of June 2015. The study is expected to enroll 2500 patients in the first two years of accrual.