CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!

Enhancing Surgical Decision Making in Cerebral Palsy

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On July 30th, the Cerebral Palsy Research Network (CPRN) submitted its first application for funding for a CP study entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study” to the Patient Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Rich Stevenson of the University of Virgina, brought together the leadership team of CPRN (Dr. Amy Bailes, Paul Gross, Dr. Susan Horn, Dr. Unni Narayanan, Dr. Garey Noritz and Dr. Jerry Oakes) along with Dr. Diane Damiano from the National Institutes of Health Clinical Center and patient advocate Michele Shusterman of CP Daily Living as investigators. This multi-center observational study will enroll 2500 patients from 18 of the CPRN Network sites to study practice variation and outcomes for lower extremity surgery including orthopedic surgeries and neurosurgery for children with CP. The need for comparative effectiveness research was identified as a key outcome from the NIH Workshop entitled “State of Science and Treatment Decisions in Cerebral Palsy” in November 2014.

You can read an overview of the study on our research page entitled Surgical Decision Making in Cerebral Palsy Study.

Adult cerebral palsy outcomes to be added to CPRN registry

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The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the effort to determine how to advance the study of outcomes of adults with CP. After examining which data sources might be most amenable to the study of adults, Dr’s Gannotti and Thorpe approached the leadership of CPRN to inquire about expanding the CPRN registry to include adults with CP. Given the number of CPRN participants that also treat adults and the importance of outcomes in the adult population, the CPRN leadership team invited Dr’s Gannotti and Thorpe to join CPRN and lead the effort to define the adult aspects of the CPRN registry.

Dr. Gannotti will join the leadership team and work with Dr. Thorpe to build an interdisciplinary team of clinicians to define the adult registry extensions and outcome measures. CPRN sites that treat adults will be able to enroll adult patients in the registry as part of their clinic.

Cerebral Palsy Therapy Registry Completed

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The physical and occupational therapy subspecialty group finished their initial data element definition on Tuesday, July 14, 2015.  The group, led by CPRN network leader Dr. Amy Bailes, a physical therapist at Cincinnati Children’s Hospital, consisted of Dr. Bailes and eight therapists who treat CP in North America including:

  • Dr. Kristie Bjornson, Seattle Children’s Hospital
  • Dr. Mary Gannotti, University of Hartford
  • Marcia B. Greenberg, UCLA
  • Dr. Karen Harpster, Cincinnati Children’s Hospital
  • Christopher F. Joseph, Kennedy Krieger Institute
  • Dr. Linda Lowes, Nationwide Children’s Hospital
  • Teressa Reidy, Kennedy Krieger Institute
  • Andrea Todd, Nationwide Children’s Hospital

The group has met consistently every other week since April 28th to define the important therapy data to collect during a team clinic visit for individuals with cerebral palsy.  The cerebral palsy therapy registry core will provide important data points about the role of therapy in outcomes in CP.

Cerebral Palsy Orthopedics Registry Completed

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The orthopedic surgery subspecialty group finished their initial data element definition on Wednesday, July 8, 2015. The group, led by CPRN network leader Dr. Unni Narayanan, an orthopedic surgeon at the Hospital for Sick Children, consisted of Dr. Narayanan and ten surgeons who treat CP in North America including:

  • Dr. Benjamin Shore, Boston Children’s Hospital
  • Dr. David Roye, Columbia University
  • Dr. Freeman Miller, A.I. Dupont Hospital for Children
  • Dr. Hank Chambers, Rady Children’s Hospital
  • Dr. James McCarthy, Cincinnati Children’s Hospital
  • Dr. Jon R. Davids, Shiners of Northern California
  • Dr. Laura Gill, Nationwide Children’s Hospital
  • Dr. Mark Romness, University of Virginia
  • Dr. Tom Novacheck, Gillette Children’s Hospital
  • Dr. William Oppenheim, University of California, Los Angeles

The group has met consistently every other week since May 13th to define the important data to collect for the cerebral palsy orthopedic interventions. Starting from other established orthopedic registries and current studies, the group focused on which data elements could be leveraged. The surgeons then determined the remaining fields necessary to make a common data model for this aspect of the registry. The cerebral palsy orthopedics registry core will provide a significant base of data for future quality improvement studies and study planning for CPRN.

Cerebral Palsy Diagnosis Data Elements Completed

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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.

CPRN sites selected for PCORI application

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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.

PI Name Site
Michael Partington Gillette Childrens
David P. Roye Jr. Columbia
Elizabeth Barkoudah Boston Children’s Hospital
David A. Yngve UTMB Galveston
Dennis Matthews Children’s Hospital of Colorado
Deborah Gaebler/Gadi Revivo Rehabilitation Institute of Chicago
W Jerry Oakes Children’s of Alabama
Amy Bailes Cincinnati Children’s Hospital
Robert Bollo Primary Children’s Hospital
Freeman Miller AI Dupont Children’s Hospital
Unni G. Narayanan Holland Bloorview Kids Rehabilitation Hospital & The Hospital for Sick Children, University of Toronto
Edward Hurvitz University of Michigan
Garey Noritz, Jeff Leonard Nationwide Children’s Hospital
Aga Lewelt University of Florida Jacksonville
Kristie F. Bjornson Seattle Children’s Hospital
William Oppenheim UCLA
Amy Viehoever UCSF
Rich Stevenson UVA

Neurosurgery Registry Data Definition Complete

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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.

Investigators to submit PCORI application

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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.

Welcome to the CP Research Network

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The Cerebral Palsy Research Network (CPRN) is a group doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with CP.  The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.