Cerebral Palsy Research Network Blog

Archive for Quality Improvement – Page 2

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.

Reflecting on 2018 and Planning for 2019

Happy New Year from all of us in the Cerebral Palsy Research Network (CPRN)! CPRN forged ahead in 2018 on the plans as laid out in the 2017 year-in-review blog post with numerous goals accomplished. The biggest highlights for the year included:

These milestones are all critical steps to advancing our mission to improve outcomes for people with cerebral palsy.

Building Momentum in 2019

We plan to build on these advances in 2019 starting in January with a webinar: How to Partner with CPRN to conduct Multi-center Trials on January 17 plus we have scheduled several abstract submissions to AACPDM for its annual meeting by January 31.

We also will continue to engage the broader community through a public webinar on the results of Research CP. This webinar will be linked with the launch of our community registry which will allow people with CP and their caregivers to actively participate in research through surveys on the web and mobile phones.

Our next face-to-face investigator meeting, hosted by Executive Committee member Dr. Ed Hurvitz, is planned for early May in Ann Arbor, Michigan. Several study analyses and manuscripts are planned for the year and an expanded presence for CPRN at AACPDM in Anaheim. Finally, we expect several more sites to join the network in 2019 and hence will be expanding our footprint and data collection for the clinical registry.

We would like to thank the investigators that volunteer their time to advance the work of CPRN for:

  • submitting protocols to their institutional review boards,
  • prodding information technology departments to implement the registry, and
  • encouraging their multi-discipline partners to participate in collecting the data in CPRN useable formats!

We also wish to thank our community advisors and the CP community for keeping us honest, staying engaged and spreading the word about the CPRN mission. We wish you all the best in 2019!