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.
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:
Report from the CPRN Clinical Registry
Garey Noritz, MD
Cerebral Palsy and Epilepsy
Adam Ostendorf, MD
Practice Variation in Spasticity Management for Diplegics
Functional Improved Related to Spasticity Treatments
Kristie Bjornson, PT, PhD
Practice Variation in Spasticity Management for Children who are not Ambulatory
Sruthi Thomas, MD, PhD
Michael Kruer, MD
Speech and Participation
Kristen Allison, PhD
Family Attitudes About CP Diagnoses
Bhooma 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.
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.