November 2020
Welcome!
Welcome to CP-NET Today! In this issue, we are excited to highlight this year's CP-NET Science and Family Day online event and share videos, webinars, upcoming conferences, and more!
The CP-NET Today! newsletter will keep you updated on exciting research and 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.
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Research Highlights!
Participating in research: Michelle and Adam's Story
by Jessica Geboers
The Trexo study at CHEO has been an innovative game-changer for Michelle and Adam Shales when it comes to physical therapy for their son, Griffin. Six months into using the Trexo, not only has Griffin's gait and mobility improved, but it has also led to increased independence and curiosity about his surroundings.
Though this was the family's first time participating in a research study, they were keen to participate. "We had dreamt of an intervention that would allow him to learn to walk with a healthy gait pattern without spasticity and allow him to repeat those movement patterns thousands and thousands of times," says Michelle Shales. "And, the world gave us the Trexo!"
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Photo by Of Wild Dawn Photography
Please note the device shown is not the Trexo.
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Watch our three short videos in which Hunter, Mussa, Marshall, and their families reflect on what everyday life is like when you communicate non-verbally.
What social stigma do they face? Who are they besides their disabilities? How do they see technology improving their lives?
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Handling Stigma and Stares |
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A Future Filled with Opportunities |
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Mental heath and wellness of young adults with CP
Watch the following webinar!
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In this workshop, Dr. Gorter discusses the preliminary findings from the MyStory research study, explores mental health and wellness in young adults with cerebral palsy during COVID-19, and provides resources where young adults and families can go for more information and support.
Click below to access the resources shared in the webinar:
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CP-NET Science & Family Day: Video recordings now available |
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7th Annual CP-NET Science and Family Day
October 6, 2020
We had our 7th annual CP-NET Science and Family Day on October 6th, 2020. We had approximately 200 attendees participate, with representation from all over the world!
To watch the sessions from the event, please select the videos below.
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Opening Remarks: Dr. Darcy Fehlings |
Panel: "If I know then what I know now" |
Keynote: Dr. Peter Rosenbaum |
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Keynote: Dr. Olaf Verschuren |
Art Component: Emiliano & Alicia Ortiz |
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Watch the breakout room sessions below! |
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Clinical Database with Dr. Darcy Fehlings
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Neurotechnology with Drs. Hana Alazem, Elaine Biddis, and Anna McCormick
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Wellness with Dr. Jan Willem Gorter
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Genomics & Epigenetics with Dr. Richard Wintle
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Virtual learning and sharing sessions from World CP Day! |
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On World CP Day, healthcare professionals from around the world recorded sessions on their experiences, challenges, and innovations when providing services to children with disabilities during the pandemic. These recordings are available through the International Allegiance of Academies of Childhood Disability (IAACD). Click the button below to access the recorded sessions! |
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Upcoming OBI Public Talk! |
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The Potential of Data Sharing: What Data Means for your Brain Health
The Ontario Brain Institute will host an online public talk to discuss the roles of data sharing in accelerating research and improving the diagnosis and treatment of brain disorders. Join the virtual event to discover the current work on securing, linking, and sharing healthcare data—and to find out how you can be part of the cause!
Thursday | November 26, 2020 | 6:30 to 7:30 PM EST
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SAVE THE DATES: Transition Conference January 26/27, 2021 |
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Mark your calendars for the first Canadian Transition Conference! We are excited to bring together people across Canada who are working to improve the transition of youth with disabilities to adulthood.
The virtual conference will be on January 26-27, 2021.
Hope to see you there!
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*New* Clinical Guidelines for the Management of Epilepsy |
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Epilepsy is one of the most frequently associated disorders with CP, and co-exists in up to 50% of children with CP (Epilepsy Foundation, 2020). New and updated clinical guidelines for the management of epilepsy in adults and children are now available for healthcare providers. Click below to download the Clinical Guidelines. |
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Participants needed!
BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study
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Are you a sibling of a brother or sister with a disability? You have a voice too!
We are looking for siblings who are:
- 14 to 25 years old
- have a sibling who is 15-17 years old with autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder or spina bifida
- living in Ontario
Siblings participants will be asked to talk with us in an interview (by Zoom or telephone) and share photographs that describe their sibling relationship. We are offering a $20 e-gift card as a thank-you for participating in this study.
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Participate in research!
Metformin for Motor and Cognitive Improvement in Children with Cerebral Palsy: A Feasibility Study
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Attention families living in the Greater Toronto and Hamilton Area:
The Metformin in Cerebral Palsy research team at Holland Bloorview is recruiting for their study to see if taking metformin alongside physiotherapy can help improve the movement and thinking skills of children with Cerebral Palsy.
See their flyer for more information or please contact:
Daniel Warner
416 - 425 - 6220 ext. 6482
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Recent Publications by CP-NET Members! |
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The Canadian Occupational Performance Measure (COPM) is a paediatric developmental outcome measure that can be used to assess individualized goals. However, the evaluative capacity of the COPM is unknown and whether it can retain capacity to measure change over time. The authors aimed to evaluate the capacity of the COPM over three years to measure clinically important changes in goals over a long time period. It was found that over three years, goals continued to be very important and relevant and performance and satisfaction scores increased significantly. However, there may be a need to reset goal descriptors over time because a ceiling effect was identified in the performance and satisfaction of the COPM.
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While many neuroimaging studies in cerebral palsy (CP) have focused on structural changes of the brain during early development, there is much less known about changes during adolescence, a time in which major changes are experienced by adolescents as they transition into adulthood. The authors conducted a feasibility study on functional connectivity (FC) and quality of life among adolescents with CP. It was found that higher well-being scores were associated with higher levels of FC in regions of the brain that are implicated in prosocial and emotion relation skills. In addition, conducting resting state FC in young adults with CP without the use of sedation was determined to be feasible.
The authors conducted a national environmental scan to describe current physician referral practices for diagnosis of cerebral palsy (CP), rehabilitation specialists for intervention, and to identify factors associated with delayed referral. The authors found that there is a great deal of variability in the age at which children with CP are referred to specialists. There is a need to enhance early detection and referral strategies by primary care practitioners to ensure early interventions for young children.
Authors: Zachary Boychuk, John Andersen, Darcy Fehlings, Adam Kirton, Maryam Oskoui, Michael Shevell, Annette Majnemer. (2020). Current Referral Practices for Diagnosis and Intervention for Children with Cerebral Palsy: A National Environmental Scan. The Journal of Pediatrics, 216, 173-180.
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