Cerebral Palsy Research Network Blog

Archive for News

Annual Conference Sparks Innovation and New Research Ideas

Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference.

Marc Randolph, cofounder and original CEO of Netflix

The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders.

Participants, including clinicians from the National Institutes of Health, discussed a range of network studies, including the relevance of genetics in cerebral palsy diagnosis, and brainstormed potential new areas in dystonia research and building capacity to care for adults with CP. 

The meeting also enabled the CPRN team to define goals for an updated 2021-2025 strategic plan, including expanding leadership systems, ensuring financial sustainability, engaging community members, and strengthening research and quality improvement projects. 

“This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.”  

Moving to a virtual format proved to be a successful venture with the format and progress of CPRN’s 2021 conference receiving praise from the attendees.

“It was great,” wrote Dr. Ed Hurvitz, chair of Physical Medicine and Rehabilitation at the University of Michigan. “The best Zoom meeting of the year for content, for career development, and being able to connect a bit with friends old and new.”

Paralympian, advocate, and community advisor Duncan Wyeth, also in attendance, remarked: “I have acquired more knowledge and insight over two half-days about my disability and potential system mechanisms to address that disability than at any other time in my life. This meeting gives me great hope and expectations for the countless individuals who will know an enhanced quality of life because of this learning network.” 

Thank you to everyone who gave their time for this important conference. It has set us on an excellent trajectory for 2021 and beyond. We greatly appreciate the commitment of our dedicated investigator team and all their hard work advancing the care of people with CP.

CPRN Investigators To Detail Important Findings

Three researchers from the Cerebral Palsy (CP) Research Network will present scientific findings at this year’s American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting.  

Kristen Allison, Ph.D., a speech pathologist and researcher at Northeastern University, will present “Speech and Language Predictors of Participation in Children with CP,” research made possible through the CP Research Network’s community registry hosted at MyCP.org.  

Allison’s research stems from parent surveys sharing the speech and language capability of children with CP and insights about their interactions with peers and common communication breakdowns due to speech and language impairments.    

Pediatric movement disorders neurologist Bhooma Aravamuthan, MD, DPhil, was also able to collate data through MyCP.org. She will present her findings on community attitudes toward a CP diagnosis and how a complete explanation of causes of CP can benefit those with the condition and their families.  

A third presentation, powered by efforts within the network, will be led by Amanda Whitaker, MD, an orthopedic surgeon who has been examining practice variation in hip surveillance at centers in the CP Research Network. Her findings are already shaping quality improvement protocols as part of the network’s drive to become a learning health network.   

AACPDM’s 75th annual meeting with take place on October 6 to 9, 2021, at Quebec City Convention Centre in Quebec, Canada.

The CP Research Network remains committed to enabling clinicians to conduct research that advances the care of people with CP via our community registry and learning health network.  

Subscribe to our newsletter to stay up-to-date on all our latest CP news. 

Discovery and Improved Health from your Lived Experience

Jacob Kean, Ph.D.
Jacob Kean, Ph.D., University of Utah

Next Tuesday, April 20, at 8 pm ET, the Cerebral Palsy Research Network will be hosting a MyCP webinar about how innovative technology is advancing CP research. Dr. Jacob Kean, Associate Professor in Health System Innovation and Research at the University of Utah, will be presenting how we can transform healthcare for CP by harnessing information from your lived experiences.  

Dr. Kean will explain how our partnership with Datavant is opening doors to breakthroughs from community participation in MyCP, receiving care at a CP Research Network Center, or by participating in our research.  

Datavant allows us to connect many different sources of information about a person’s health. For example, by connecting information generated by a fitness tracker like a FitBit or a smart phone with our registries, the CP Research Network could find patterns of movement that lead to better cardiovascular health.   

By organizing millions of pieces of information about living with cerebral palsy we are on the path to unique discoveries. These exciting opportunities are possible because our community members are granting permission for us to use their information in ways that takes advantage of new technology trends, while simultaneously maintaining their privacy.  

Tune in by signing up for the webinar and learn how technology and information sharing is allowing us to move CP research into the forefront of scientific advancements.  And if you haven’t already, consider joining MyCP!