Fall 2017

Dear ,

Welcome to the Fall edition of CP-NET Today! In this issue, we are thrilled to to share a brand new video based on the 'F-words' in disability framework, and ask for your help in spreading these six powerful words! We are also excited to present new resources and publications examining the role of genetics in Cerebral Palsy (CP), share presentations and photos from our recent World CP Day celebration, and invite you to attend an upcoming webinar on communication technology for children with CP. 

The CP-NET Today! newsletter will help you keep up-to-date on exciting research developments in the area of 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 CP-NET Video! 
"These six F-words won't fill up your swear jar: What do the F-words mean to youth with impairments?"



CP-NET is proud to present a brand new video based on the "F-words" concept, released on October 6 in celebration of World CP Day!  Share this video and help us spread these fresh ideas one 'f-word' at a time! This video was created in close partnership with Ontario youth with disabilities, with funding from  the Ontario Brain Institute

Vote for "These six F-words won't fill up your swear jar: What do the F-words mean to youth with impairments" in the   CIHR Institute of Human Development, Child and Youth Health (IHDCYH) "Video Talks" Competition! 

Votes are tallied by the number of LIKES (thumbs up!) on each video.  Voting is only for the month of November - so please don't delay and vote today! 

New Resource!
In Brief: Genomic Copy Number Variation in Cerebral Palsy


Scientists have known for many years that changes in genes can result in disorders that affect the muscles as well as the nervous system, and have identified many genes involved in neurodevelopmental and neuromuscular disorders. This "In Brief" describes a CP-NET study that investigates whether changes in genes could also have effects that result in CP.

Read now.

Upcoming Webinar! 
Communication Technology for Children with Cerebral Palsy 

Wednesday, November 29 | 12:00pm - 1:00pm EST

The ability to communicate thoughts, feelings and information is essential to the well-being of a child and their family. Many children with CP have challenges communicating with speech, and too often it is assumed that a child who does not speak is unable to connect with, or understand, the world around them.

CP-NET is proud to present "Communication Technology for Children with Cerebral Palsy", a webinar highlighting new research and technologies that aim to assess and support a child's ability to communicate.

This webinar will be of interest to individuals with CP and their families, researchers and healthcare professionals. All information will be presented in plain language, and there will be an opportunity for audience questions.

Spots are limited and our webinars fill up quickly - register today!

   


Presenters




Johanna Geytenbeek, 
PhD
Speech Language Pathologist and Clinical researcher,
Free University Medical Centre (Amsterdam, Netherlands)




Danijela Grahovac
 
Parent Researcher, 
CanChild Centre for Childhood Disability Research



Fanny Hotzé
Paediatric Assistive Technology Specialist, 
Holland Bloorview Kids Rehabilitation Hospital

CP-NET Science & Family Day 2017
Thank you for a wonderful World CP Day!


On October 6, 2017, our community came together to celebrate World CP Day with the 4th Annual CP-NET Science & Family Day. Thanks to the families, caregivers, clients, healthcare professionals and researchers who helped make this event a smashing success!

All presentations are  now available online, including:

Better Nights, Better Days for children with cerebral palsy
Shelly Weiss (SickKids / Better Nights Better Days project)

Painting cultural attitudes towards physical disability
Kira Gossack-Keenan (McMaster University Medical Student)

How do you want to get involved in research?
Jordan Antflick (OBI), Jan Willem Gorter (McMaster University / CP-NET) & Jenine Paul (OBI)

Curriculum of Caring  
Kerry Boyd (McMaster University)

Featured Publication!
The role played by genetics in CP has received increased recognition in recent years. In an earlier CP-NET funded study published in 2015, researchers established that 9.6% of participants with CP inherited genome copy number variants (CNVs) from a parent. Following up on this surprising finding, the purpose of this study was to identify additional CNVs and mutations specific to hemiplegic CP, a subtype involving one side of the body. The authors genotyped 97 participants with hemiplegic CP and their parents, and identified de novo (not inherited from either parent) CNVs in 7.2% of participants in comparison to population controls. These findings indicate that de novo CNVs may contribute to the occurrence of hemiplegic CP and other CP subtypes, and that genetic testing may have value as a diagnostic tool for children who present with symptoms of CP. Authors: Zarrei MFehlings DLMawjee KSwitzer LThiruvahindrapuram BWalker SMerico DCasallo GUddin MMacDonald JRGazzellone MJ, Higginbotham EJCampbell CdeVeber GFrid PGorter JWHunt CKawamura AKim MMcCormick AMesterman RSamdup DMarshall CR, Stavropoulos DJWintle RFScherer SWGenet Med. 2017 Aug 3. doi: 10.1038/gim.2017.83. [Epub ahead of print]

Recent Publications by CP-NET Members

The exergame "Liberi" has been found to increase physical fitness in youth with CP GMFCS II. 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, 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]

The average age for diagnosis of CP is currently between age 12 and 24 months. However, a child's brain is most likely to respond to interventions in the first few months of life. The objective of this systematic review of the literature is to identify the most accurate evaluations for diagnosing CP early, and to summarize best available evidence for early interventions. The study finds that a diagnosis of CP or high risk for CP can be made accurately before 6 months corrected age. Early detection, followed by early intervention, should be the standard of care to optimize outcomes, prevent complications, and improve parent and caregiver well-being.   Authors:  Novak I Morgan C Adde L Blackman J Boyd RN Brunstrom-Hernandez J Cioni G Damiano D Darrah J Eliasson AC de Vries LS Einspieler C Fahey M Fehlings D  et al. JAMA Pediatr. 2017 Sep 1;171(9):897-907. doi: 10.1001/jamapediatrics.2017.1689. 
 
Active Video Gaming for Children with Cerebral Palsy: Does a Clinic-Based Virtual Reality Component Offer an Additive Benefit? A Pilot Study
Children with CP who are classified at GMFCS Levels I and II may benefit from interventions which incorporate virtual reality (VR) systems to improve balance and gross motor skills. While VR systems that are specifically designed with certain rehabilitation goals in mind are available, off-the-shelf active video games (AVGs), such as Nintendo's Wii and WiiFit, are less expensive, more accessible, and provide a greater variety of games for players. To examine the use of AVGs, a pilot non-randomized controlled trail was held. One group of five children received one hour of VR training for five days, followed by a six week AVG program at home, which was supervised online by a physical therapist. The other group consisted of six children, who only completed the six week AVG program at home. The Gross Motor Function Measure Challenge Module (GMFM-CM) and Six Minute Walk Test (6MWT) were used to evaluate changes. The study found no statistically significant changes between the two groups. The group that only received the six week AVG program at home showed a statistically and clinically significant improvement in GMFM-CM scores, but the group who also received the VR training for five days demonstrated a statistically and clinically significant decrease in 6MWT distance. However, after two months post-intervention, all 6MWT scores returned to baseline. Authors:  Levac D , McCormick A, Levin MF, Brien M, Mills R, Miller E, Sveistrup H. Phys Occup Ther Pediatr. 2017 Apr 4:1-14. doi: 10.1080/01942638.2017.1287810. [Epub ahead of print]


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