Spring 2017

Dear ,

Welcome to the Spring 2017 edition of CP-NET Today! Warmer days are just around the corner and you may already be enjoying those first  few hints of green - a favourite colour here at CP-NET. We look forward to a productive new season!

Read on for an issue packed with resources, including a new plain language research summary and a video addressing common misconceptions about CP. We are also excited to invite you to "Growing up with CP: Mental health and well-being", our first webinar initiated and led by young adults from the CP-NET community!

The CP-NET Today! newsletter will help you keep up-to-date on exciting research developments in the area of Cerebral Palsy (CP) research funded by the  Ontario Brain Institute (OBI) , as well as news and events of interest to the CP-NET community. Please feel free to share this newsletter with family, friends and colleagues. They can subscribe to the CP-NET Today! e-Newsletter for free  by registering here . Don't forget to check the  cp-net.org  website for more great resources on CP.

New Resource!

Constraint-Induced Movement Therapy for children with cerebral palsy: Is there an impact on brain activity?

Children with hemiplegic CP often have an imbalance in brain activity between the left and right sides of the brain, typically with less activity in the affected side as compared to the unaffected side. This "In Brief" describes a study aimed to determine if, by providing Constraint Induced Movement Therapy (CIMT) to children with hemiplegia, activity in the sensory and motor areas of the affected side of the brain are activated and whether this activity remains six months after treatment.

Upcoming Webinar!

Growing up with CP: Mental health & well-being

: April 21, 2017

Time:  11:30am - 12:30pm

Jessica Geboers | Journalist & CP-NET Community Advisor 
Georgia Beauchemin | Student & CP-NET Community Advisor 
Jan Willem Gorter | MyStory Principal investigator & Director of CanChild

While challenges with body movement is the key feature of Cerebral Palsy, it is important to recognize that the experience of living with CP goes well beyond these physical, visible, effects. Teens and young adults with CP and other disabilities are more likely than their peers without disabilities to develop mental health conditions, such as depression and anxiety.

CP-NET is excited to present "Growing up with CP: Mental Health & Well-being," a webinar initiated and led by young adults for young adults. Highlighting both lived experience and recent research from the CP-NET MyStory project, this webinar will explore the intersection of mental health and CP, and discuss how we can better support young people in developing positive outcomes in mental health and well-being. 

In addition to young people with CP, this webinar will also be informative for parents and health professionals. There will be an opportunity for audience questions.

Spots are limited and webinars fill up quickly - Register now!  

New Video!
Meet Jessica. This is what she wants you to know about CP.

Jessica, a journalist and member of the CP-NET community, joins Jan Willem to share some of the misconceptions that surround cerebral palsy and what we can do to tackle them. 

This video is part of a series produced by the Ontario Brain Institute for Brain Awareness Week (Mar 13-19). 

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CP-NET Community Profile: Jan Willem Gorter
Director of CanChild & CP-NET Executive Committee Member

Tell us about yourself!
I was raised and educated in the Netherlands. I moved to Canada in 2008, and now live in the beautiful town of Dundas with my spouse and our dog, Brodie. While we visit the Netherlands three or four times a year, Ontario is now "home" for us as well. I like to take advantage of the natural beauty of our area and enjoy sailing on Lake Ontario. I also playthe euphonium in the Dundas Concert Band.

What is your research about?
Focusing on the themes of family, function and fitness, my research aims to improve the physical health, mental health and well-being of children and youth with disabilities and their families. I have a special research interest in the transition from pediatric to adult healthcare services.

What have you enjoyed the most about your research?
As a clinician scientist, I don't work in a lab - I work directly with teenagers in a clinic. I want to see what they are struggling with, and help them find ways to take charge of their health. At the same time, I'm very interested in understanding how the brain changes during adolescence and youth, such as the development of executive functioning abilities that are necessary for reasoning, problem solving and planning. I find that what I learn from working with teenagers in the clinic links back to my research interests in brain development, which again informs my clinical practice. I enjoy that this is a complete cycle

What motivates you to do research?
I want to know how things work and how we can do things better, which is what evidence-based research is all about. I'm also motivated by the interdisciplinary nature of childhood disability research.  Treating complex conditions requires us to work together - it's a big puzzle and no one has all of the pieces. We need to work in partnership, and that includes families and young people. 

This interview originally appeared on CurioCity, the online resource centre for Let's Talk Science

Recent Publications by CP-NET Members

The exergame "Liberi" has been found to increase physical fitness in youth with cerebral palsy GMFCS II. This game is custom-designed, and is outfitted with recumbent bicycles to connect players in an online multiplayer virtual game. However, because gross motor functions differ between the levels of the GMFCS, there may be an effect on the benefits received from the exergame, such as the time spent above the target heart rate (THR) and the players' game success. To examine this issue, three balancing algorithms were created, utilizing  pedaling cadence to control avatar speed in order to balance gaming success and cardiovascular exercise between GMFCS II and III. The control algorithm was known as Generic Balancing (GB), and simply matched the avatar's speed to the player's pedaling cadence. The second algorithm was One-Speed-for-all (OFSA), where all avatars move at the same speed regardless of pedaling cadence as long as the player is pedalling. The third algorithm was Target-Cadence (TC), whereby the avatar's speed is scaled to a unique target cadence to elicit 40% of a player's heart rate reserve (the THR). The TC algorithm was found to be statistically similar to GB and OFSA in balancing gaming success. However, contrary to the hypothesis, it was found that the TC algorithm was the poorest in balancing cardiovascular exercise between GMFCS II and III. Additionally, players at GMFCS II were found to have higher game success and time above THR, which highlights the need to further refine the exergame to account for differences in gross motor function between GMFCS levels.   Authors MacIntosh A Switzer L Hernandez H Hwang S Schneider AL Moran D Graham TC Fehlings DL Games Health J.  2017 Mar 6. doi: 10.1089/g4h.2016.0073. [Epub ahead of print]

There is a growing need for tools that can be used in clinical practice and research to determine the vision abilities of children with cerebral palsy (CP), as vision has a profound effect on functioning and disability. Vision is a complex construct in itself, and this study reports a method for conceptualizing "visual ability" as a measureable construct. Pre-existing assessments tool were subject to a two-phase process, whereby deductive content analysis linked items on the tools to the ICF-CY, while vision-specific "Activity" items were explored with inductive thematic analysis.  Using this approach, the researchers determined that existing assessment tools can measure vision across ICF-CY domains of Body Functions, Activities and Participation, and Environmental and Personal Factors. Additionally, items identified as vision-specific were defined as "how vision is used," forming the basis for the conceptualization of visual ability. Through thematic analysis, 13 themes that can be organized into 3 categories to reflect a child's observable visual behaviors were identified. In the future, these observable visual behaviors could be used to assess how vision is used in daily activities. Overall, the study was able to demonstrate an approach for explaining complex topics such as vision using language derived from the World Health Organization while building on the current state of knowledge.   Authors Deramore Denver B Adolfsson M Froude E Rosenbaum P Imms C BMC Med Res Methodol. 2017 Mar 21;17(1):46. doi: 10.1186/s12874-017-0316-6.

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