Cerebral Palsy Research Network Blog

Archive for Research – Page 2

Webinar: Report from the Cerebral Palsy Registry

The Cerebral Palsy Research Network (CPRN) announced its second webinar in its MyCP Webinar Series entitled a “Report from the CPRN Cerebral Palsy Registry” would be open to the public on Thursday, April 23 at 8 pm via Zoom.  Dr. Garey Noritz, a developmental pediatrician and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, will present the initial findings from the CP registry which includes both children and adults.  This 20-minute presentation will be followed by an open Q&A with Dr. Noritz.

Dr. Noritz is the principal investigator for the CPRN CP Registry which gathers medical, surgical and outcome data from patients during clinical care.  The CPRN CP Registry is critical infrastructure to accelerate CP research and was created in response to the strategic plan for cerebral palsy issued by the National Institutes of Health following a workshop on the state-of-the-science and treatment in CP in late 2014.  This presentation has been crafted specifically for the CP community to understand CPRN’s focus on research to improve outcomes in CP.

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

CPRN Abstracts Accepted for AACPDM Annual Meeting

The Cerebral Palsy Research Network (CPRN) received acceptances for all four abstracts that its investigators submitted to the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to be held on September 23-26, 2020 in New Orleans, Louisiana.  CPRN noted that it submitted half as many abstracts this year because four of the eight from last year are proceeding toward publication!  The annual AACPDM meeting is a great way for CPRN to disseminate its findings to the broader cerebral palsy provider and research community.

This year’s abstracts include:

  • A scientific presentation on the CPRN clinical cerebral registry by Garey Noritz, MD.
  • Two scientific presentations on adults with CP – one on health and wellbeing and the other on pain by Mary Gannotti, PT PhD.
  • A breakfast seminar on how to participate in registry-based research with CPRN by Paul Gross and Garey Noritz, MD.

These presentations, like last year, are powered by the growth in the CPRN clinical and community registries which follow people with CP over the long term.  Dr. Gannotti’s presentation will provide an interim report on adults from CPRN’s community registry hosted at MyCP.org. Dr. Noritz’s presentation will describe the characteristics of several thousand CP patients enrolled in the CPRN clinical registry from 12 sites including surgical interventions.  Dr. Noritz and Mr. Gross will present researchers with how they can tap into these two registries to generate new knowledge in CP. People interested in preliminary versions of these presentations can sign up for the MyCP webinar series where Dr. Noritz will be presenting a snapshot of the CPRN clinical registry on April 23, 2020.

CPRN Delivers eConsent Tool to Accelerate COVID-19 Research

The Cerebral Palsy Research Network (CPRN) delivered an innovative new eConsent tool to the University of Utah to help accelerate multiple COVID-19 research studies under development.  In addition to the core goals for eConsent to improve participants’ understanding of research studies, risks and benefits, eConsent provides additional safety and equality in research by supporting social distancing and the inclusion of rural populations in research.

CPRN’s eConsent tool was developed in conjunction with University of Utah’s Erin Rothwell, PhD whose NIH funded research on eConsent has demonstrated significant benefits to study participants over paper-based consent (HD082148).  CPRN principal investigator Michael Kruer, MD, from Phoenix Children’s Hospital, sought an eConsent solution for his recently funded cerebral palsy (CP) genetics research (NS106298). CPRN, Rothwell and Kruer partnered to expand Rothwell’s original mobile prototype to a browser and mobile device application for a wide variety of informed consent scenarios.

“We are excited that CPRN has been able to develop such a rich feature set of interactive features to improve participant comprehension within eConsent in such a timely manner,” said Dr. Rothwell, Associate Vice President for Research Integrity and Compliance for the University of Utah.  “Deploying eConsent at the University to support the demand for COVID-19 studies while keeping our patients and clinicians safe is of paramount importance during this pandemic.”

CPRN sees eConsent as an important building block in its mission to accelerate research for cerebral palsy.  Tools that increase the community’s understanding of research objectives while making the consent process more efficient and effective is important to conducting more research into CP and including more members of the community in the process.  CPRN will provide its eConsent platform to sites conducting research its network.