Cerebral Palsy Research Network Blog

Archive for Research – Page 2

Webinar: Patient Reported Outcomes and Shared Decision Making

Unni Narayanan, MD, MSc
Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

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!

Webinar: Practice Variation in Spastic Cerebral Palsy

Paul H. Gross
Paul Gross, Chairman and Founder, CPRN

The Cerebral Palsy Research Network (CPRN) announced its fourth webinar in its MyCP Webinar Series entitled a “Practice Variation in Spastic Cerebral Palsy” would be open to the public on Tuesday, June 2 at 8 pm via Zoom.  Paul Gross, chairman and founder of CPRN and Adjunct Associate Professor at the University of Utah, will present his findings in practice variation in spasticity management in North America.  This 20-minute presentation will be followed by an open Q&A with Mr. Gross.

Paul Gross is the principal investigator for an internally funded study to look at practice variation in the treatment of people with spastic cerebral palsy (CP). The presentation will include qualitative data from interviews that Mr. Gross conducted with more than 40 clinicians in North America about their spasticity management practices and also data from the CPRN CP Registry about surgical interventions for spasticity including selective dorsal rhizotomy and intrathecal baclofen pumps from five centers. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. While many treatments have been shown to be efficacious, clinical practice for treating spasticity varies greatly across North America. This presentation is planned for members of the community that are interested in learning about treatment differences and futures studies of spasticity management. Gross’s qualitative work has been used as preliminary data for the development and submission of two two grant applications to the National Institutes of Health to further study these variations in practice.

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!

Webinar: Cerebral Palsy and Epilepsy

Adam Ostendorf, MD
Adam Ostendorf, MD

The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom.  Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry.  This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.

Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy.  Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients.  But little research has been conducted on this unique population.  Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research.  The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.

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!