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.
The Cerebral Palsy Research Network (CPRN) submitted a significant multi-center grant application to the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), last month. Functional Improvement Related from Spasticity Treatments (FIRST) has been in the planning stages for several years and exemplifies the type of study that CPRN was created to conduct. FIRST, if funded, would engage 25 clinical centers across North America to look at children with ambulatory CP that receive botulinum toxin A (BTA) injections in their lower extremities to reduce spasticity and improve their walking. FIRST seeks to compare children receiving serial BTA injections to those that go on to receive a selective dorsal rhizotomy – a neurosurgery that seeks to permanently reduce or remove spasticity.
Several CPRN investigators worked on the development of FIRST which was submitted by three co-principal investigators including Kristie Bjornson, PT, PhD from Seattle Children’s Hospital, Paul Gross from the University of Utah and Jeffrey Leonard, MD from Nationwide Children’s Hospital. FIRST plans to enroll 1624 subjects across the 25 sites. The study design is observational in nature (patients are not assigned to interventions) and leverages significant expertise at the University of Utah with “causal inference” methodologies. This design is critical because it enables the testing of effectiveness of interventions in the real world setting of clinical practice without compromising the quality of the findings. The particular funding opportunity at NINDS to which this grant was submitted was specifically created to accommodate observational studies for conditions like CP where randomizing children to these interventions is not feasible.
The review process at NIH is thorough but also lengthy. The study team does not expect a funding
decision before the Fall of 2020. But
the process of assembling the study team, gathering preliminary data from the
network and developing an application of this scale was a success in of
itself. It demonstrated the deep
commitment of the CPRN site investigators to improve outcomes for people with