Welcome!
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Welcome to our Fall 2019 edition of CP-NET Today! In this issue, we are thrilled to share presentations and photos from our recent CP-NET Science and Family Day, introduce a new video about communication in non-verbal people with Cerebral Palsy (CP), and highlight an upcoming webinar focusing on young adults with CP and their transition into adulthood. We are also excited to introduce several new research studies and highlight some recent publications from our team.
The CP-NET Today! newsletter will keep you updated on exciting research and 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.
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CP-NET Science and Family Day!
To celebrate World
CP Day, our community came together at the Whitby Abilities Centre on October 5, 2019 for the 6th Annual CP-NET Science & Family Day! A huge thank you to the families, young adults, caregivers, healthcare professionals and researchers who helped to make this day a smashing success! Our work is driven by the needs and experiences of families and clients and we are so happy they were able to attend and participate in the event.
During the day we heard from many young adults with CP, caregivers, healthcare professionals and students. Enjoy the below photos from the day. Videos of the presentations and panel discussions will soon be available at:
cp-net.org
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We are proud to share our new video about communication in non-verbal people with CP. This video highlights the C-BiLLT - an accessible test to assess someone's language comprehension skills. The video premiered on World CP Day and is nominated in the
CIHR Institute of Human Development, Child and Youth Health (IHDCYH) "Video Talks" Competition!
Click to view the video:
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| I can talk! Technology gives a voice to children and youth who cannot speak |
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We need your help! I
f you like the video, please vote for us. You can vote by
LIKING 
(clicking on the thumbs up!)
underneath the video.
A Google or YouTube account is needed to vote.
Voting is only open for the month of November 2019 - so please do not delay and vote today!
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Transitioning to Adulthood - Experiences of Young Adults with CP
The transition from childhood to adult life can be filled with excitement as young adults assume new responsibilities and roles but it can also be a challenging time to become familiar with a new "norm". For youth with chronic health conditions/disabilities, the transition into the adult healthcare system is an important part of the journey. Sadly patients and families often describe the transfer of care as 'falling off a cliff' due to the lack of preparation, information, supports, and skills to assist with the process.
CP-NET is proud to present '
Transitioning to Adulthood - Experiences of Young Adults with CP'
, a webinar presented by families and young adults with CP who will share about their healthcare journey from childhood to adult life. Presenters will provide insights on what could have helped them and what can help others with the transition.
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.
This webinar will be prerecorded and distributed on December 6, 2019. If you have any questions for our young adult presenters, please email cpnet@mcmaster.ca by November 29, 2019
and we will ask them in the webinar.
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Have your say in the future of epilepsy research! The Ontario Brain Institute's epilepsy research program (EpLink) is looking to better understand the questions Canadians have about epilepsy and seizures through a survey found at the following site:
braininstitute.ca/epilepsy-PSP.
Our target audiences are patients, clinicians, and caregivers across Canada.
This is an opportunity for you to lend your expertise from your own personal/professional experience, and have your say in setting epilepsy research priorities. Let us know what matters to you!
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Metformin Cerebral Palsy Trial
Do you have a child diagnosed with cerebral palsy?
They may be eligible to take part in our research study!
What is this study about?
- We are doing a clinical trial to see if taking the study drug Metformin for 16 weeks plus physiotherapy can improve motor and thinking skills compared with physiotherapy alone in children with cerebral palsy
- Participants are randomly assigned (50/50 chance) to get either the study drug Metformin or a placebo
Who can take part?
- Children between 5-12 years old with cerebral palsy and stiffness on both sides of their body
- Born prematurely (less than 33 weeks gestation)
- Gross Motor Function Classification System (GMFCS) Level of II - V
- Meet other safety and eligibility criteria
What is involved?
- Taking the study drug every day for 16 weeks and being monitored for an additional 6 months
- Going to Holland Bloorview in Toronto:
- Physiotherapy twice a week for 16 weeks (45 minutes per session)
- Regular examinations with a study doctor and 3 blood draws
- Going to SickKids in Toronto (3 visits):
- MRI pictures of the brain (1 hour per visit)
- Memory and thinking tests (~ 90 minutes)
To learn more please contact:
Daniel Warner
416-425-6220
ext 6482
at Holland Bloorview
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Understanding pain trajectories and their association with well-being in children and youth with cerebral palsy
Question... Do you have cerebral palsy? Help us learn about if you ever hurt and how you feel about it.
What is this study about?
- We are asking children and youth with cerebral palsy to help us learn about if they hurt and if it affects them.
- This study will help us better understand about if and how much pain is felt by children and youth with cerebral palsy.
Who can participate? Children and youth who...
- Are 8 to 18 years old
- Have cerebral palsy
- Can communicate with or without assistive device
- Can complete a sorting task
- Are current or past clients of Holland Bloorview or Grandview treatment centres
What's involved?
- We will meet/email/phone you one time every week for five weeks.
- The first meeting will be at your treatment center & will last one hour.
- Four questionnaires emailed, mailed or over the phone (your choice) will take 5 minutes each.
- The last questionnaire emailed, mailed, by phone or in person at your treatment center (your choice) will take 30 minutes.
- We will ask you questions about if you have pain, what the pain is like, how it makes you feel and affects you.
- Evening and weekend appointments are possible.
What are the benefits of participating?
- Helping us understand if and when you have pain, and how it makes you feel.
- You will help inform families, clinicians and researchers about how pain and well-being in children and youth with cerebral palsy changes over time.
Participants will receive a $25 gift card as a thank you for their time.
Principal Investigator:
Dr. Darcy Fehlings
Centre for Leadership:
CP Discovery Lab
Contact Information:
Dr. Darcy Fehlings 416-425-6220 x 3586
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TO ASK QUESTIONS OR TO SIGN UP, CONTACT:
Heather Shearer
416-425-6220 x 6597
Toll Free: 1-800-363-2440 x 6597
REB #:19-848
Version Date: July 30, 2019
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We invite you to participate in the '
Tecla
-e Study: Enhancing self-management of individuals with severe disabilities using a cloud-
connected technology'. The study is a pre
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market evaluation of a new assistive technology device called the Tecla
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e. Tecla
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e is a cloud
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connected assistive device that provides users with control of their smart devices and environment. It can control up to 8 Bluetooth
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compatible devices or internet
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enabled appliances.
We are looking for participants who:
- Are 10 - 30 years old
- Have a motor impairment preventing them from using standard technology interfaces (e.g., mouse, keyboard, touch screen) due to Cerebral Palsy (GMFCS III or greater) or any other condition
- Have the ability to use single switch scanning or the ability to use multiple switches
- Have normal or corrected-to-normal vision
- Are proficient in English
The research team will visit participants in their homes, once a week for 4 weeks. During these sessions a series of questionnaires will be completed to understand the participant's environment, individual goals, and needs that the Tecla
-
e can help meet. The team will also complete an in
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home set
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up of the Tecla
-
e and associated devices.
If you are interested to know more, please contact one of the following recruiting sites:
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Holland Bloorview Kids Rehabilitation Hospital in Toronto
Fanny Hotzé
416-425-6220 ext. 6459
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CanChild at McMaster University
in Hamilton
Salma ElMansy
905-525-9140 ext. 26852
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John McGivney Children's Centre
in Windsor
Mileva Vuletic
519-252-7281 ext. 232
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Recent Publications by CP-NET Members
Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. Researchers at McMaster conducted a qualitative study to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well
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being. Sixteen people with CP, aged 17-29, Gross Motor Function Classification System (GMFCS) levels I-V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Key findings included shared challenges of growing up with CP related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Medical care and counselling people with CP needs to include discussions about mental health, pain, and sexual health/identity, especially in young adulthood.
Dr. Hana Alazem and colleagues in Ottawa published a paper on the first use of a robotic walker in youth and young adults with cerebral palsy (CP) GMFCS Level IV. Semi-structured interviews were conducted before and after each robotic walker trial. Five people, aged 13-22, with quadriplegia secondary to CP participated. The assessment team included two physiotherapists, an occupational therapist, a physiatrist and three engineers. Key findings of the robotic walker related to physical and social impacts. Physical advantages included the ability to walk hands-free and promotion of physical fitness. Physical barriers included limited harness design and large device size. Examples of social advantages were increased independence and peer engagement. A social disadvantage identified was limited use on uneven terrains. Based on the findings modifications are planned for the robotic walker including decreasing the size, more harness designs, decreasing the force required to take an initial step, adding a joy stick for user control and creating a more versatile base that can be used on different terrains such as ice or baseball fields.
Dr. Elaine Biddiss and colleagues
provided a theoretically grounded understanding of engagement in interactive computer play-based motor therapies for children with cerebral palsy (CP) in home settings. A scoping review was conducted to understand how engagement is influenced by features of the technology and intervention design that impact intrinsic and
extrinsic motivation, child and parent values and expectancies, and the processes of self-regulation. Twenty-six articles were identified that described home-based clinical trials of interactive computer play-based motor interventions for children with cerebral palsy. Using a narrative synthesis framework for analysis, the researchers found that features of the technology and the intervention influence feelings of autonomy (e.g., personalization), competence (e.g., calibration), and relatedness (e.g., social play, virtual therapist/coach). There may be multiple and differently valued goals in interactive computer play-based interventions (e.g., game- and therapy-focused) that, if disconnected or unmet, negatively impact engagement. Multiplayer interactions, real-time feedback and progress tracking provide information that influences self-regulation and engagement over time.
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cpnet@mcmaster.ca
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