Research presents cerebral palsy research updates, funding and funding opportunities, as well as new publications and the information offered within them, to keep the cerebral palsy community informed. Learn how you can be a part of the conversations by joining MyCP, an interactive cerebral palsy community forum, today!

PCORI Cerebral Palsy Study Decision Imminent

The Patient Centered Outcomes Research Institute (PCORI) makes its funding decisions at public meetings of its board of governors. The next PCORI board meeting is scheduled for January 26, 2016 and will include a formal decision on the CPRN/University of Virginia application entitled Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study. The CPRN leadership team members, all of whom are co-principal investigators (PIs) for this study, are eager to hear the results of this PCORI application process. Study funding will greatly accelerate the work of CPRN by providing additional support to bring the leadership team, site PIs and the study patient stakeholder partners together as soon as April, 2016 to kick off the cerebral palsy study.

In the interim, CPRN will announce charter members later this month. Charter members will play a key role in finalizing the infrastructure and governance for the CPRN registry and network operations. The PCORI study and future CPRN studies will build on the registry and network infrastructure to accelerate study planning and core data capture for research.

NIH Plans CP Research Workshop in Basic and Translational Science

The Cerebral Palsy Research Network (CPRN) was initiated as an outcome of the November 2014 NIH Workshop entitled the State-of-the-Science and Treatment Decisions in Cerebral Palsy. CPRN co-founders Dr. Amy Bailes, Dr. Garey Noritz and Paul Gross were all in attendance at that meeting and involved in the task force that led the effort to plan a national CP registry that has resulted in CPRN. Another significant finding from that meeting was the need for more basic and translational research in cerebral palsy. As an organizer of the first workshop, Gross, a former National Institute of Neurological Disorders and Stroke advisory council member, helped plan the agenda for the upcoming Workshop on Basic and Translational Research for Cerebral Palsy. CPRN participant Dr. Shenandoah “Dody” Robinson will be speaking about her work with stem cells and cerebral palsy. This topic was included because of significant patient advocacy interests expressed at the 2014 workshop.

The CP research workshop agenda builds on many topics that were discussed at the 2014 meeting including neuroplasticity, stem cells, neuroimaging and early detection. NIH encourages both scientists and patient advocates to attend this CP research workshop. The two day agenda includes speakers that are both basic and clinician scientists and provides significant opportunities for discussion and breakouts during the workshop. CPRN leadership will be in attendance and encourages centers with basic and translational research activities in CP to attend this meeting on March 24-25, 2016 at NIH. The NIH Workshop overview and registration links can be found here on the NIH Meeting site.

Enhancing Surgical Decision Making in Cerebral Palsy

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.

CPRN sites selected for PCORI application

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

Investigators to submit PCORI application

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.