Welcome to the Summer edition of CP-NET Today!
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.
This newsletter highlights an upcoming webinar, a video, a new tool for clinicians as well as a research summary and peer-reviewed publication.
Please feel free to share this newsletter with family, friends and colleagues. They can subscribe for free 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!
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CP-NET Renewed for 5 Years!
We are pleased to announce that the Ontario Brain Institute (OBI) has approved a further five-years of funding for CP-NET - our Ontario based translational neuroscience program focused on individuals with cerebral palsy (CP)!
The CP-NET project connects individuals with CP and their families to a network of researchers from across Ontario, and across scientific disciplines, to improve our understanding of CP and accelerate the development of new neuroscience treatments. If you want to participate in CP-NET projects or find out additional information please visit
CP-NET.org or contact Dayle McCauley at
[email protected] We look forward to working together with you to make a difference!
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CP-NET Science & Family Day!
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On October 19, 2018, join us to celebrate World CP Day with the
The theme of the day is "CP Around the World."
The day will consist of reports about the latest CP-NET research and technology advancements and will also have an open house of community organizations to allow families to connect, network, and learn more about resources in the community!
Read about our 2017 event here!
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We want to hear from YOU!
As part of the Science and Family Day theme (CP Around the World)
we will be exploring how the F-Words are used from a global perspective.
We need your help
! We are asking people to make a short video clip (no more than 30 seconds) about how you personally use the F-Words.
To help make the video meaningful and informative, we would love to receive videos from individuals with cerebral palsy, parents, service providers, etc.
! Each short video clip will be compiled from submissions from people around the world to understand what the F-words mean on a global scale. We would like you to think about one or more of the following questions when creating your video clip:
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- What do the F-Words mean to you?
- How do you hope to use the F-Words in the future?
- What is the message you want to share with others?
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If you would like to participate in the video, please contact
Alice Soper
at
[email protected]
for a consent form and link to video submission.
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New Resources!
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New Recording Available!
A
CP-NET Webinar on the new Selective Dorsal Rhizotomy (SDR) program in Ontario was presented on June 12th, 2018 by parents Christine and Larry Marion, Dr. Golda Milo-Manson, Dr. George Ibrahim, and Marilyn Wright.
Moderated by
Dr. Jan Willem Gorter
This webinar highlighted frequently asked questions and practical information about all the steps before, during, and after surgery.
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UK Report on SDR!
The NHS England recently released the following report "
Clinical Commissioning Policy: Selective Dorsal Rhizotomy (SDR) for the treatment of spasticity in Cerebral Palsy (children aged 3-9 years)
."
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CP-NET 5 Year Report!
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Check out the CP-NET report which showcases the highlights of research, stakeholder engagement, and accomplishments over the past 5 years! The report includes research on a wide range of topics including the MyStory Project, access technology, the risks of newborn infection and CP, knowledge translation, Exergame, and investigating the role of genetics in CP. To learn more, you can watch videos, view pictures, and read short summaries about the latest research findings! We encourage you to come visit the report which you can access here:
http://cpnetreport.ca/
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Recent Publications by CP-NET Members
Researchers at CanChild conducted a scoping review to examine what is currently known about information needs of young people with CP during transition to adulthood. Young people and their parents have been found to lack information about where to find services in adulthood, how to access the services, and what to ask during the transitional process. The findings shed light on the burden felt by individuals and their families when information is not available when needed. Ultimately, information must be more accessible and readily available to support people throughout transition so they are better prepared for adulthood. Authors:
Freeman M,
Stewart D, Cunningham CE, & Gorter JW. (2018). Journal of Transition Medicine.
The Association Between Maternal Age and Cerebral Palsy Risk Factors
This retrospective cohort study explored the association between maternal age and specific cerebral palsy (CP) risk factors. Advanced maternal age has been shown to be associated with an increased risk of CP. One possible explanation for this is that the underlying etiology of CP in the children of older women tends to stem from antenatal factors. Genetic factors have also been described as a possible contributor to the causation of CP, and genetic mutations are more common in older mothers and fathers. Overall, findings suggest that risk factors tend to occur in early gestation or at conception for mothers of children with CP at both extremes of maternal age. Authors:
Schneider, RE, Ng P, Zhang X, Andersen J, Buckley D, Fehlings D,...& Oskoui M. (2018). Pediatric Neurology, 82, 25-28.
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Contact Us: if you have any questions or comments, please contact us at
[email protected].
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A province-wide collaboration between:
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STAY CONNECTED WITH CP-NET!
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