Cerebral Palsy Research Network Blog

Archive for August 2016

CPRN and UVA Describe PCORI CP Study in Webinar

Learn about CP Intervention Study Application to PCORI

Richard Stevenson, M.D., University of Virginia

Richard Stevenson, M.D., University of Virginia

University of Virginia’s Dr. Richard Stevenson and CPRN Chairman Paul Gross hosted a webinar entitled “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic Cerebral Palsy using Patient Centered Outcomes” with CPRN Site Investigators and its recently reconstituted Patient Stakeholder Partners committee on Wednesday, August 10, 2016. We have posted the webinar of the call and the accompanying slides on CPRN’s Resource Page for public consumption. The mega application to the Patient-Centered Outcomes Research Institute (PCORI) totaled 770 pages including a 45-page research plan and a 379-page budget. The application garnered 142 letters of support and collaboration from CP focused investigators, societies and academies, patients and stakeholders. Set expectation of when you might find out about funding from PCORI.

Listen to the webinar to hear investigators Stevenson, Gross, Horn and Shusterman describe the planned study, the analysis, the use of the CPRN network and how patients and stakeholders will be involved. The webinar is 40 minutes long including Q&A.

New CPRN Cerebral Palsy Study Posted

Next week, the Cerebral Palsy Research Network (CPRN) in partnership with the University of Virginia, will resubmit its application for funding for a CP study entitled “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic Cerebral Palsy using Patient Centered Outcomes” to the Patient-Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Richard Stevenson of the University of Virgina and CPRN Chairman and Founder Paul Gross, brought together founding members of CPRN (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 and CP NOW Foundation as investigators. This multi-center observational study will enroll 2000 patients from 23 of the CPRN Network sites to study practice variation and outcomes for lower extremity surgery including orthopedic surgeries and neurosurgery for children with bilateral spastic 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.

We are excited by the focus and scope of this revised application to PCORI. We invite you to read about all about it on our Research study page. We will post the results from this application process in early 2017 when we hear from PCORI.