Cerebral Palsy Research Network Blog

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.

CPRN Launches Community Education Webinars

The Cerebral Palsy Research Network (CPRN) has announced a new community education webinar series focused on its findings and directions in research for cerebral palsy (CP).  One webinar per month will be presented by the principal investigator conducting the research and be followed by an open Q&A.  Interested participants must sign-up. These webinars will not only provide the community with an excellent opportunity to learn about important new research projects but also to interact with the clinician researchers conducting these studies.  Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings about adult health and wellbeing from the adult registry that was launched last year.  It will be presented by Dr. Mary Gannotti, a professor from the University of Hartford and the co-chair of the CPRN adult study group, who has led the development of the study in conjunction with several clinicians who treat and study adults with CP in addition to help from the CPRN Adult Community Advisory Committee.

The webinars scheduled for the rest of the year include:

April 23Report from the CPRN Clinical RegistryGarey Noritz, MD
MayCerebral Palsy and EpilepsyAdam Ostendorf, MD
JunePractice Variation in Spasticity Management for DiplegicsPaul Gross
JulyFunctional Improved Related to Spasticity TreatmentsKristie Bjornson, PT, PhD
AugustPractice Variation in Spasticity Management for Children who are not AmbulatorySruthi Thomas, MD, PhD
SeptemberCP GeneticsMichael Kruer, MD
OctoberSpeech and ParticipationKristen Allison, PhD
NovemberFamily Attitudes About CP DiagnosesBhooma Aravamuthan, MD, DPhil

MyCP is a web portal that provides the extended community of people with CP including caregivers and providers an open forum to discuss research, participate in research and read about the latest efforts led by CPRN. It is owned and operated by CPRN.

CPRN Investigators to Enhance Patient/Clinician Interactions

Unni Narayanan, MD, MsC
Orthopaedic Surgeon

The Cerebral Palsy Research Network (CPRN) Executive Committee Member, Unni Narayanan, MD, of SickKids Hospital in Toronto, Ontario Canada, has been awarded funds to support research to enhance patient/clinician interactions to improve patient outcomes in cerebral palsy (CP).   The award from the Strategy for Patient Oriented Research (SPOR) program at the Canadian Institutes of Health Research (CIHR) is to support a shared decision-making framework to enhance patient/clinician decision making and goal setting prior to surgical interventions for CP. 

Dr. Narayanan will be joined by several Co-Investigators from CPRN including Laurie Glader, MD at Boston Children’s Hospital, Paul Gross at the University of Utah, Garey Noritz, MD at Nationwide Children’s Hospital and Brandon Rocque, MD at Children’s Alabama.  The team will work to build tools based on Dr. Narayanan’s outcome measures for children with CP who are ambulatory called the Gait Outcome Assessment List (GOAL) and for children with CP that are not ambulatory called the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).  The tools will generate targeted guidance for caregivers and clinicians to plan surgical interventions.  These tools will be available in the participating clinics and on CPRN’s community web portal MyCP.  The study hypothesizes that parents, children and clinicians will be more satisfied with outcomes when interventions are based on caregiver and child goals for improvement.