Dear ,
We are thrilled to circulate the Spring 2019 edition of
CP-NET Today!
Continue reading to discover the latest CP-NET resources and announcements, and catch up on CP-NET Science & Family Day presentations and celebrations.
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.
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CP-NET Science & Family Day
On October 19, 2018, our community came together to celebrate World CP Day with the
5th Annual CP-NET Science & Family Day. Thanks to the
families, caregivers, clients, healthcare professionals and researchers who helped make this event a superb success!
We received very positive feedback from attendees on the event evaluation form (from approximately 65 attendees). Attendees felt that it was an excellent and family friendly way to network within the CP community. We received a number of positive and motivational comments from our audience:
"Loved the panel discussion and the key note!! Thanks for a great day"
"Engaging, informative. Speakers were well-prepared, knowledgeable"
"Congratulations on a tremendous event!"
Check out the CPNET Science & Family Day videos on the links below!
Save
October 5th, 2019
for the next CP-NET Science and Family Day!
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Upcoming Webinar!
Covert (and Overt) Attitudes Toward Disability
Presented by Lucy Lach and Donna Thomson on April 25th at 12:00 pm EST.
'Attitudes' toward children, youth and adults with disabilities impact the way healthcare practitioners and the public interact with them and make decisions that affect their lives.
These 'attitudes' reflect 'worthiness,' guide clinical decision-making, and help with the allocation of limited and scarce resources. Shifting attitudes requires champions that challenge taken-for-granted assumptions about worthiness of their lives.
Spots are limited and webinars fill up quickly!
About the Speakers
Donna Thomson is a caregiver, author and activist. She is the co-author of T
he Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (and author of T
he Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. She blogs regularly at The
Caregiver's Living Room. Donna is a board director of Kids Brain Health Network (KBHN) and is a co-instructor of a KBHN funded, online course in family engagement in research at McMaster University.
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Lucyna Lach
is an associate professor in the School of Social Work and an associate member of the Departments of Pediatrics, Neurology and Neurosurgery, Faculty of Medicine, McGill University. Her research focusses on documenting the different aspects of the lives of children with nerodisabilities. Dr. Lach's current projects address social determinants of health of children with neurodisabilities. She is co-leading a research team to document determinants like income and service use.
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Research Update!
Update on Genome Sequencing in Cerebral Palsy
The CP-NET genomics team, led by Dr. Richard Wintle at SickKids hospital, has started decoding the entire genomes of CP-NET families. Through this work, we hope to better understand the biology of CP: how changes to the genes affecting development and function of muscles and nerves work to result in CP.
Initially, the team is studying ten families where more than one person has CP, or that have other features suggesting a strong genetic predisposition. Statistical geneticist Dr. Andrew Paterson, also at SickKids, will lead the analysis of these families' genomes. Our second approach is to study 30 families with spastic diplegia, similar to our earlier study of hemiplegia, in hopes of finding genomic changes specific to diplegia. Finally, we are also initiating a study of over 100 additional families with all types of CP. Ultimately, all of this work will complement work by our collaborators around the world, as part of the International Cerebral Palsy Genomics Consortium.
Read more about the Genomics project here!
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Better Nights,
Better Days for Children with Neurodevelopmental Disorders
National Research Study
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Better Nights, Better Days for Children with Neurodevelopmental Disorders
(BNBD-NDD) is an evidence-based eHealth program to support parents of children ages 4-10 years old with neurodevelopmental disorders (NDD) who experience insomnia. Insomnia is defined as problems settling to bed at bedtime, night wakings, and early morning awakenings.
The innovative BNBD-NDD program tailored for parents of children with Cerebral Palsy (CP), as well as children with Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and Fetal Alcohol Spectrum Disorder (FASD).
The BNBD-NDD program is being evaluated using a randomized controlled trial. The research team is currently recruiting Canadian parents of children ages 4-10 years old with CP, ADHD, ASD, and FASD to participate in the study and receive access to the program.
Interested families can click here for more information and sign up to participate.
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Get Involved in Research!
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MyStory
Most brain research for people with CP focuses on early brain development. More research is needed to understand how the brain changes through the teenage years and into adulthood. The MyStory Project will study physical health (fatigue and pain), mental health (anxiety and depression), chronic stress and overall well-being in adolescents and young adults with CP between the ages of 13-30.
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Recent Publications by CP-NET Members
Cerebral palsy (CP) results from a brain injury that can be caused by many factors. One of these is a lack of oxygen to the brain at time of birth (perinatal hypoxic-ischemic (HI) brain injury). This injury can damage or even kill brain cells. This in turn may result in challenges to motor function and learning. Currently, there are no treatments that can repair the damage once it has occured. One promising therapy approach to HI brain injury in animal research studies involves transplanting 'neural precursor cells' (NPC). To advance the treatment into a clinical setting, it is essential that NPCs from humans also be tested in animals. However, a major limitation is the high risk that the animals' immune systems will reject the NPCs. A solution is to transplant the NPCs into rats with weakened immune systems. This study establishes a model of HI brain injury in immune-deficient rats that allows for further exploration of the transplantation of NPCs, and to assess survival and safety of the use of NPCs for neonatal brain damage.
Authors: Beldick SR, Hong J, Altamentova S, Khazaei M, Hundal A, Zavvarian MM, Rumajogee P, Chio J, Fehlings M. PLoS One.
2018 Nov 28:1-22.
This study examined the usability and feasibility of a low-cost gaming station for force resistance training in pediatric hand grasp and arm therapy. Six therapists and six children with cerebral palsy (ages 7-16 years) were recruited for the study. The Canadian Occupational Performance Measure was used to set performance and satisfaction goals for children. The study found that therapists considered the gaming station to be highly usable and children made clinically significant progress on therapy goals.
Authors: Hernandez H, Khan A, Fay L, Roy JS,
Biddiss E. Games for Health Journal. 2018 Aug 1: 7(4).
Research shows us that people with cerebral palsy (CP) are at greater risk for multimorbidity: the presence of two or more long-term health conditions, compared to the general population. However, the understanding of multimorbidity in individuals with CP is limited to research within small samples in specific regions that use inconsistent measurement tools. This study proposes a protocol to develop an evidence-informed core outcome set of tools to measure multimorbidity risk in adolescents and adults with CP. The measure includes perspectives from healthcare providers, researchers, and individuals with CP and their families. This is the first step to monitor and prescribe strategies to combat multimorbidity in this population.
Authors:
McPhee P, Benner J, Balemans A,
Verschuren O, van den Berg-Emon R, Hurvitz E, Peterson M, van der Slot W,
Roebroeck M, Gorter JW. Trials. 2019 Mar 19:1-9.
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News & Announcements!
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