Cerebral Palsy Research Network Blog

Archive for June 2016

CPRN Investigators Invited to Apply for PCORI Funding

The CPRN investigators have been invited to submit a full Patient-Centered Outcomes Research Institute (PCORI) application for the Large Pragmatic Studies to Evaluate Patient-Centered Outcomes – Spring 2016 Cycle which closes on August 9, 2016. Richard Stevenson, M.D., of the University of Virginia, is the lead Principle Investigator in the study entitled “Comparative Effectiveness of Surgical and Non-Surgical Interventions for Ambulatory Children with Bilateral Spastic (Diplegic) Cerebral Palsy using Patient-Centered Outcomes.” The study funds requested are in excess of $7 million. This five-year study, if funded, will fill critical information gaps in the treatment of children with CP for clinicians and patient families. Children between the ages of 2 and 12 with ambulatory CP that are considered candidates for surgical interventions will be enrolled at the 18 sites within the network. Site selection will be completed before the end of June 2016. The study is expected to enroll 1,500 patients in the first two years of accrual.

This study is a revision of a study that was submitted last year. The PCORI review committee encouraged the investigators to narrow the scope of the study regarding inclusion criteria to limit the heterogeneity of the population being study and increase feasibility of enrolling the target number of patients. We are pleased to have the opportunity to submit this revised study and are optimistic about it being funded.

CPRN Registry Data Collection Begins!

Major milestone marks start of a national cerebral palsy registry!

The CPRN Registry Protocol was approved by the Nationwide Children’s Hospital’s (NCH) Institutional Review Board (IRB) on Monday, June 6, 2016 with a retroactive start date of April 22, 2016. The CPRN CP registry protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CP registry research project, is a critical step in the collection of data for the CPRN Registry. This approval means that all patient data that has been collected at NCH since April 22 – 73 patients in all – will be included in the CPRN Registry.

While the NCH’s IRB approval is exciting news it will also act as a catalyst for the 17 other CPRN clinical centers for IRB submission to begin. Other CPRN sites could be ready to collect cerebral palsy registry data in just a few months.

It has taken less than one year from the time that CPRN was formed to create a national registry until the first patient data was collected! CPRN greatly appreciates the efforts of Dr. Garey Noritz, Director of the Cerebral Palsy Program at Nationwide Children’s Hospital, for his leadership in getting the CPRN Registry up and running in such an efficient manner.

CPRN Adds Adult Patient Advisory Committee

Critical Step In Creating Patient-Centered Research

The Cerebral Palsy Research Network (CPRN) invited a group of 11 adults with CP and adult caregivers to form the adult study panel of its Patient Advisory Committee (PAC). The PAC will be involved in the work of CPRN at several levels including advising on the strategic direction of CPRN, help prioritize its research and participate at every level of study development including design, recruitment, analysis, and dissemination. Patient involvement not only empowers the community, but also increases the relevance of study results.* The adult study panel will be focused on the specific areas of adult study in CPRN’s research starting with the CPRN Registry. The first effort for the adult study panel will be to review the CPRN Registry and its initial patient reported outcomes. The adult study panel members include:

  • Kate Cardoza
  • Dallila Castillo
  • Jill Chambers
  • Ted Conway
  • Karen Irick
  • June Kailes Issacson
  • Andrew McAleveay
  • Karen Pleasant
  • Carol Shrader
  • Robert Watson
  • Duncan Wyeth

CPRN’s Adult Registry team, led by Mary Gannotti, PT Ph.D. of University of Hartford, and Debbie Thorpe, PT Ph.D. of University of North Carolina Chapel Hill, will engage the members of adult study panel in the CPRN’s initial path into research of adults with CP.

Michele Shusterman, CPRN’s community liaison, will be expanding the PAC to include an additional 10-12 patients and caregivers for children in the coming weeks.

* Frank L, Basch E, Selby JV, For the Patient-Centered Outcomes Research Institute. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA.2014;312(15):1513-1514. doi:10.1001/jama.2014.11100.