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,
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

Karate takes center stage for Maya

I have heard may ambulatory adults with CP say how much they enjoy and have benefitted from karate. But, I never thought karate could be modified enough for Maya (a wheelchair user with spastic quadriplegia) to both enjoy it and physically challenge herself. She has proven me wrong once again. This year when she told me she wanted to participate in a karate class once a week, I worried Maya would be sitting off to the side and not moving much at all, while the other children practiced karate moves and played together. I didn’t push back because karate was built into her class time and I knew I could count on her to tell me or her teaching assistant if she felt awkward or left out.

During the third week of school, exhausted and moody during her after school physical therapy, Maya told me and her therapist that she was tired from her karate class that day. I thought she must be playing possum. As I watched her struggle to move, I considered the validity of what she said about being tired from karate, but quickly dismissed it. I truly didn’t think it was possible for her to exert herself so much with her upper body that she would be so wiped out. Over the next few weeks however, I realized karate provided Maya with personally meaningful challenges and more participation opportunities than I thought it would. The more I heard about  how she was challenging herself, the more I realized we had to make an adjustment to her schedule.

At first, I proposed she do less activity during karate so she would still have energy for therapy. Unfortunately, that didn’t work out because even with half of a karate lesson, she was still having trouble with her stamina and now, she was also upset that she was missing out on some of the karate class. Trying to come up with an easy solution, I half-heartedly proposed that she change therapists and therapy days if she wanted to continue. I never thought she would agree to this because she loves her therapist, she takes PT very seriously and she doesn’t like change. Imagine my surprise when she turned to her therapist, who she adores, and said, “I am so sorry C. and it’s not about you, but I need to change therapy days.” Clearly, she was serious about karate.

It took me a few days to wrap my head around prioritizing a “bonus activity” over physical therapy, but then I realized that the karate experience was as vital to her development as her therapy. Many children begin to choose activities over therapy as they get older. Pre-teens and teens want to be with their peers and do what they are doing—enjoying life and having fun instead of sitting in a therapy center with their parents and therapists. At this age, if we can find a way to balance the need for some structured therapy time with fun yet challenging activities like piano (now modified guitar too!) and karate, Maya is more likely to remain more active, healthy and happier throughout her life.

Once I got passed the initial stress of adjusting her therapy schedule and switching therapists (no small thing), I have been over the moon with the results. Maya has found a new activity she loves, her upper body is becoming stronger and her range of motion has improved tremendously. She also is enjoying the structure and discipline of the class.

From dance, to piano–where she initially required three people to support her body–and now to karate, Maya has shown me repeatedly that she has the determination, patience and hidden skills to do much more than anyone imagines (and the people around her set the bar high). She even continues to surprise her biggest champion, her Mom.