Cerebral Palsy Research Network Blog

Archive for Patient Engagement – Page 2

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!

CPRN Launches Two New Studies

The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org.  The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17.  The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOW Research CP award in November 2019 in support of creating this study.  Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online.  The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families.  The survey is available to parents and caregivers for children and adults with CP 18 years and older.  Both studies can be taken by signing up for MyCP.org.

MyCerebralPalsy.org (MyCP)
Join MyCP!

The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org.  More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies.  Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures.  The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive.  Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.

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!