Cerebral Palsy Research Network Blog

Archive for November 2017

NINDS Invites CPRN to Oversight Committee

National Institute of Neurological Disorders and Stroke

National Institute of Neurological Disorders and Stroke

The National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutions of Health (NIH), and the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), have invited CPRN to participate in an oversight committee for the next generation of the NINDS Cerebral Palsy Common Data Elements (CP CDEs). NINDS, in conjunction with the biomedical research community, has developed CDEs for many conditions to accelerate research and maximize data sharing opportunities within and across neurological conditions. The original CP CDEs were initiated following the NIH Workshop on CP in 2014 – the same meeting that launched the creation of the CP registry at the core of the Cerebral Palsy Research Network (CPRN). CPRN shared its registry data definition with the NINDS CP CDE efforts and provided significant feedback during the CP CDE’s public comment period in the Fall of 2016. Numerous CPRN leaders and principal investigators also worked on the subcommittees that developed the NINDS CP CDEs.

The NINDS CP CDE oversight committee has been created “in an effort to ensure that the CP CDEs remain a current and useful tool for investigators and their research teams.” CPRN Chairman, Paul Gross, represents CPRN on the oversight committee. While CPRN has already committed to harmonizing the CPRN Registry data model with the NINDS CP CDEs, this active role in the process will help CPRN maximize the benefits of its registry data collection for the entire CP research community.

Reducing Infection Associated with Baclofen Pump Implantation

The Cerebral Palsy Research Network (CPRN) is preparing to roll out its first quality improvement (QI) protocol to reduce infections from the implantation of an intrathecal baclofen (ITB) pump. Baclofen is a drug used to reduce spasticity. For some patients, the permanent placement of a baclofen pump can provide continuous reduction in spasticity alleviating the need to take oral medication on a daily basis. ITB pumps have a high infection rate (approximately 9%).1 An ITB pump infection requires the patient to have the pump removed while the infection is treated and then implanted again. Treating the infection typically requires two weeks of intravenous anti-biotics before re-implanting the pump six weeks later. CPRN is planning to use QI methodology to reduce the infection rate for ITB pumps.

Quality improvement methodology involves systematic activities that are organized and implemented by an organization to monitor, assess, and improve its quality of health care and it has its origins in manufacturing.2 The use of QI has gained significant traction in healthcare in last two decades following significant reports from the Institute of Medicine in 1994 and 2003. CPRN was founded to improve outcomes in cerebral palsy through clinical research and quality improvement.

The CPRN baclofen pump QI effort is led by Dr. Robert Bollo who is a neurosurgeon at Primary Children’s Hospital in Salt Lake City, Utah. The CPRN ITB pump QI protocol builds off of Dr. Bollo’s experience as a neurosurgeon with the Hydrocephalus Clinical Research Network.

HCRN used QI to reduce the rate of shunt infections by 35%.3 This is significant because shunt infections used to occur at a similar rate to ITB pump infections – approximately 8.5%. CPRN Executive Committee member Dr. Amy Bailes from Cincinnati Children’s oversees CPRN’s quality improvement initiatives.

CPRN will pilot the ITB pump quality effort at three sites initially including Children’s of Alabama in Birmingham, Primary Children’s Hospital in Salt Lake City, and Seattle Children’s Hospital. The goal of reducing ITB pump infection rates will improve the outcomes of people with CP.


1Spader, Heather S., et al. “Risk Factors for Baclofen Pump Infection in Children: a Multivariate Analysis.” Journal of Neurosurgery: Pediatrics, vol. 17, no. 6, June 2016, pp. 756–762., doi:10.3171/2015.11.peds15421.
2“Quality Improvement.” Health Resources and Services Administration, Health and Human Services, Apr. 2011, www.hrsa.gov/sites/default/files/quality/toolbox/508pdfs/qualityimprovement.pdf.
3Kestle, John R. W., et al. “A Standardized Protocol to Reduce Cerebrospinal Fluid Shunt Infection: The Hydrocephalus Clinical Research Network Quality Improvement Initiative.” Journal of Neurosurgery: Pediatrics, vol. 8, no. 1, 2011, pp. 22–29., doi:10.3171/2011.4.peds10551.

CPRN Prepares Its First Publication

The Cerebral Palsy Research Network (CPRN) delivered its first article to its newly formed Manuscript Review Subcommittee in preparation for submission to a leading neurology journal. The subcommittee, chaired by Dr. Jeffrey Leonard, chief of neurosurgery at Nationwide Children’s Hospital, is a multi-discipline group of clinicians, researchers in and advisors to CPRN who provide editorial oversight for CPRN publications. This group is intended to ensure that CPRN publications are of the highest quality and move through journal editorial processes more quickly.

CPRN’s first manuscript describes the process and results from the Research CP initiative that CPRN conducted in partnership with CP NOW. Research CP brought members of the CP community together with clinicians and researchers to set a patient-centered research agenda for CP. CPRN plans to use the results of the Research CP initiative to prioritize its future research endeavors.

In addition to Dr. Leonard’s leadership, the Manuscript Review Subcommittee includes:

  • Diane Damiano, PT, PhD from the NIH Clinical Center
  • Mary Gannotti, PT, PhD from University of Hartford
  • Susan Horn, PhD from the University of Utah
  • Ed Hurvitz, MD from University of Michigan Medical Center
  • Jacob Kean, PhD from the University of Utah
  • Michael Kruer, MD from Phoenix Children’s Hospital (Vice Chair)
  • Jason Rhodes, MD from Colorado Children’s Hospital
  • Brandon Rocque, MD from Children’s of Alabama
  • Christine Thorogood, MD from University of Florida Jacksonville