Cerebral Palsy Research Network Blog

Archive for Quality Improvement – Page 2

Watch the New Webinar on How to Partner with CPRN

The Cerebral Palsy Research Network (CPRN) released a new webinar entitled “How to partner with CPRN to conduct multi-center research” today. The original webinar was conducted in January 2019 by CPRN Chairman Paul Gross, CPRN Data Coordinating Center Principal Investigator Jacob Kean, PhD, and CPRN Principal Investigator Michael Kruer, MD.  The webinar was developed to educate researchers on the capabilities of CPRN to conduct multi-center research and how a researcher can partner with CPRN to leverage its capabilities.  The benefits to the researchers include: 

  1. Strengthen grant applications with CPRN preliminary data
  2. Accelerate research through established network sites
  3. Leverage integrated patient advisors.

“We are very excited to see how our open science approach has ignited new collaborations in research for cerebral palsy,” said CPRN Chairman Paul Gross.  “We expect five or more centers to join CPRN before the year’s end which would bring the total to 29 centers. This webinar and an upcoming Request for Applications opens the door for new types of research partnerships.”

The webinar’s release, here and on YouTube, is very timely as CPRN prepares its first Request for Applications in partnership with CPNOW, a foundation focused on community education and research funding and our community engagement partner.  The webinar describes the different types of studies that can be conducted with CPRN and the data management and analysis resources that it provides for investigators. 

Originally delivered as an instructional course at the American Academy for Cerebral Palsy and Development Medicine in the Fall of 2018, the webinar format makes the content accessible to everyone.  In the webinar, Dr. Kruer details how he partnered with CPRN to go to secure a multi-million-dollar grant from NIH for his CP genetics study.  We hope you watch and we welcome your feedback on how to make partnering with CPRN accessible and clear.

CPRN Advances Multiple Study Concepts

Overview sessions were followed by small group working meetings.

The Cerebral Palsy Research Network (CPRN) advanced 12 studies during its two-day investigators’ meeting in Ann Arbor, Michigan last week.  The meeting enabled study leaders to engage in deep discussions about study concepts, designs and execution with multiple medical discipline leaders across the network.  Twenty-seven sites throughout the US and Canada were represented by the 36 attendees at the meeting.  The format of the meeting, a series of small group breakouts and informational sessions, was a key factor in the value of the time spent working through important study decisions and directions.

Laurie Glader, MD, Boston Children’s Hospital

“This meeting was truly inspirational,” said Laurie Glader, MD, a pediatrician from Boston Children’s Hospital. “It allowed clinicians and researchers to bring their passions about advancing research for the CP community together. Ideas from multiple perspectives were explored, reflecting the multi-disciplinary nature of CPRN along with the breadth and depth of what is possible through the network.”

The research that was discussed directly addressed ideas from the Research CP patient-centered agenda that was co-developed by CPRN and CPNOW.  Study concepts under development include:

  • Comparative effectiveness of medical and surgical spasticity treatments
  • The effect of physical therapy dosage on outcomes after orthopedic surgery
  • The role of body composition and strength in the long-term health of adults with CP
  • Health care transition
  • Shared decision making prior to surgical interventions.

Existing studies that are enrolling or preparing to enroll patients were another substantive topic including:

  • CP genetics
  • Epilepsy in CP
  • Adult health, stigma and chronic pain
  • Intrathecal baclofen pump quality improvement
  • CPRN’s clinical registry and
  • CPRN’s newly launched Community Registry accessible at mycerebralpalsy.org.
Small group breakouts enabled deep dives in study aims and implementation.

“I left this meeting knowing that the CP community’s research needs will finally be addressed in a comprehensive, strategic and meaningful way,” said Michele Shusterman, President of CP NOW and CPRN’s director of community engagement.  “The commitment and passion of this group’s energy was palpable and inspiring. It won’t be long now until the answers to some of our most pressing concerns will start rolling in and lead to better care and treatment for people with CP. “ 

Investigators leading the efforts discussed will use the learning from this meeting to tune their study aims and implementations. The collaborations at the CPRN investigator meeting enable months of work to be completed in just a few days!

CPRN To Expand Presence at Combined AACPDM and IAACD Meeting

The Cerebral Palsy Research Network (CPRN) investigators will be presenting in eight sessions this fall at the combined American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 73rd Annual and the International Alliance of Academies of Childhood Disabilities (IAACD) 2nd Triannual meeting. All of CPRN’s new abstracts have been accepted including one scientific presentation, five posters and one breakfast seminar. The eighth presentation is a focused symposium in which CPRN will contribute to a panel discussion of CP registries across the world.

Six of our presentations are built on data from our registry including:

  1. Garey Noritz, MD, “Report from the Cerebral Palsy Research Network- 2019”
  2. Adam Ostendorf, MD, “Epilepsy Prevalence, Treatment and Intractability in the Cerebral Palsy Research Network Cohort”
  3. Jeffrey Leonard, MD, “A Descriptive Study of Surgical Interventions for Cerebral Palsy Patients in the Cerebral Palsy Research Network Registry”
  4. Robert Bollo, MD, “A prospective, multi-center initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project”
  5. Mary Gannotti, PT, PhD, “Pain experiences among aging adults with cerebral palsy: leveraging the Cerebral Palsy Research Network Community Registry for Patient Reported Outcomes”
  6. Paul Gross and Mary Gannotti, “How to engage patients in research and garner patient-reported outcomes using the CPRN Community Registry.”

As mentioned in the blog post from February 6, 2019, we believe the CPRN registry is gaining traction to advance research in CP. We are honored to have the recognition of the scientific program committee of AACPDM and IAACD. CPRN congratulates all the investigators who will be presenting their scientific efforts and thanks all the network sites for the many contributions to the registry and CPRN’s scientific collaborations.