Growing up with CP

The experience of living with CP goes well beyond motor impairments, with the majority of teens and young adults with CP facing additional challenges in physical and mental health and wellness. At the same time, most CP brain research focuses only on the early development of the brain. This leaves critical gaps in our understanding of how the brains of young people with CP continue to develop beyond childhood, and how this development may relate to, or be influenced by, concerns like chronic pain, fatigue, anxiety and depression.

The CP-NET MY-STORY project is taking an interdisciplinary approach to understanding the complex journeys experienced by young people with CP. The main component is a longitudinal study, where researchers follow the same group of participants over time, and check in with them once a year, so they can fill out surveys that ask questions about their mental health, their quality of life, family relationships, and their levels of pain, stress and fatigue. Participants also provide a sample of hair, which allows researchers to measure how much cortisol (a stress hormone) they have in their bodies over time, while a few drops of blood are taken to look at activity in participants’ immune systems. A smaller group of participants are also being recruited to look at snapshots of the brain in action – looking at how different parts of the brain are acting during a series of tasks. Using these recordings of the working brain, researchers are investigating how young adults with CP process information, make decisions, and respond to emotional images. By combining the survey data with hair samples, blood samples, and scans of brain activity, CP-NET hopes to gain a better understanding of how CP impacts the brain development of adolescent and young adults, and influences their overall mental health and well-being.

Early on, participants shared that they have far more to tell than what can be captured in a series of questions. Researchers responded by adding an interview component to the project, which provided young people with the opportunity to tell their story in their own words. Through these stories, researchers heard that young people with CP are concerned about employment, relationships, and their ability to self‐manage their condition.

The MY-STORY project is currently underway, and preliminary results suggest that more than 30% of our participants were reporting substantial levels of anxiety or depression symptoms in the first year of the survey. Researchers have also done some important ‘proof of concept’ work to show that the techniques they are using to look at snapshots of brain activity (fMRI and EEG) can work well in patients with CP. Though the studies still need more participants, the ongoing brain imaging studies are pointing to some possible important links between how some areas of the brain communicate with each other, and the severity of a patient’s symptoms of depression and pain. This research could play an important role in helping adolescents with CP successfully transition to adulthood by identifying markers that could put someone at a higher risk for developing mental health problems, and providing clues for the directions of future research into new treatments.

Be Fast and Be Strong

Improvements in advanced gross motor movement skills are a key functional goal for ambulatory children with cerebral palsy, however, the best way to delivering these interventions is unknown. While lower limb strength training is common in rehabilitation, motor-learning-based interventions are now also being used to bring about brain and functional improvements. This has led researchers to seek a better understanding of the impact of motor-learning-based interventions on advanced gross motor movement skills in independently ambulatory children with cerebral palsy and, the associated effects on brain function and physical activity-based participation.

In order to determine the optimal intervention, a large multicentre study is necessary. However, first a smaller scale study of 20 children participants was conducted to determine feasibility. The 20 participants were randomly assigned to either the strength training program called Be Strong or the motor-learning-based program called Be Fast. The training program included 16 sessions over six weeks where children worked individually with their trainer. Researches evaluated changes in advanced movement skills, brain function, walking abilities, and physical activity-based participation. All 20 children participants were involved in designing their training program to best fit their personal goals and also provided feedback after each session.

After completion of the feasibility study, all participants in both Be Fast and Be Strong demonstrated equal and significant improvement in their movement skills. However, children in Be Fast reported greater satisfaction in performance of their goals, indicating that this program may be better suited to their individual goals.

The next step is to increase the sample size to help researchers better understand the changes in the brain following participation in the intervention programs. By learning about the changes in the brain, it may help increase our understanding of how to most effectively teach children gross motor skills.

Stem Cell Research

Improving Lives with Innovative Technology

The NeuroTechnology Platform of CP-NET aims to augment the physical and social well-being of children with CP through innovative technology development and evaluation. There are three core technologies which include Liberi Exergaes, SoloWalk, and Botley’s Bloost Blast (BBB). The Liberi Exergames enables young people to engage in physical activity while socializing with peers in a networked video game. Players of Liberi pedal a stationary bicycle to move their avatar in a virtual world. The SoloWalk, the robotic walker supports independent mobility and gait training, fostering feelings of autonomy and mastery. Botley’s Bootle Blast (BBB) targets upper limb motor therapy via an engaging, multiplayer video game featuring “mixed reality.” In mixed reality, children use real-life objects to interact in the virtual world promoting translation of skills practiced to real-life function.

Integral to our platform is the belief that technologies should consider the multifaceted needs and wants of individuals. To this purpose, our technologies are evaluated not only for their ability to improve clinical outcomes related to fitness and motor function, but also for their potential to connect, engage, and empower individuals with CP. This platform addresses important gaps in healthcare, providing opportunities for home-based training designed to engage and motivate, with technologies designed to meet the needs of individuals with diverse abilities.

The methods for the NeuroTechnology Platform are diverse and evolve with each stage of development. Early prototypes undergo rigorous usability trials to identify areas for improvement. In the later stages of design, prospective case studies are used to evaluate the efficacy of neurotechnology interventions both in the clinic and at home. With each iteration and continuous feedback from individuals with CP, our technologies evolve to better meet the needs of individuals with CP. Understanding how technologies are used in different contexts is key to their design. For instance, Liberi has been studied in intensive summer camps at Holland Bloorview Kids Rehabilitation Hospital and in after school programs for kids with CP held jointly between Holland Bloorview and Sunny Hill Health Centre for Children. BBB was first integrated into clinical care at Holland Bloorview to understand how therapists use it to support children in reaching their therapy goals.

Our technology development and evaluation hinges on an iterative participatory design process which relies on stakeholder engagement. We design in partnership with people with CP and their families and clinical teams from the earliest conception of an idea to its clinical evaluation and translation into practice. Our technology development is a continuous dialogue and people with CP are the most important voice. More than 30 children and their families have been engaged in the iterative design and development of these technologies.

We have learned that exercise goals can be achieved through Liberi and that BBB provides an engaging platform for the practice of therapeutically relevant movements. We have learned that the social connections that can be achieved through video game play are an engaging and positive source of motivation for children and youth that can help support them in reaching their exercise and therapy goals. We have developed novel algorithms and approaches to balancing the playing field between players with different physical capabilities. We also learned the importance of designing for accessibility and cost- for example, in Liberi, we built a sensor toolkit that enables any recumbent exercise bike to be easily converted into an exergaming station suitable for use with Liberi.

In the future, we will continue to improve these technologies ensuring that we can meet the needs of people with CP of all abilities and across the lifespan. We will build evidence in support of their efficacy in larger clinical trials and enhance our understanding of how to best apply these technologies in people-centred interventions. We will continue to pursue commercialization opportunities both through start-ups and licensing options to ensure that individuals with CP and their families all around the world can access and benefit from these technologies.

Stakeholder Engagement

The CP-NET Knowledge Translation program is designed to broadly and clearly inform stakeholders within the Cerebral Palsy community about CP-NET research. A great example of this is Richard Wintle’s clear and accessible explanation, in a recent addition of Keeping Current, of research into the genetics of CP.

What makes the KT program––CP-NET itself––truly special, is its commitment to stakeholder engagement. “We may be good scientists,” says Dr. Peter Rosenbaum, “but the issues that we study––or at least certainly the clinical and health services issues we study––and the things we talk about need to be based upon what’s important to parents and to young people with cerebral palsy. This group of very engaged, very enthusiastic people is keeping us honest, informed, and on our toes. It’s a partnership that I think many people envy.”

As can be seen by the growth of our annual World CP Day event: Science and Family Day, CP-NET has had tremendous success connecting with individuals with CP and their families; involving them in our work, listening to, valuing and implanting their feedback. As such, not only has attendance grown, but we begin planning the World CP Day event earlier each year in order to implement the abundance of helpful feedback and ideas that followed the previous event.

Another fantastic example of stakeholder collaboration, is the What The F-Words Mean to Me video. Created by and featuring CP-NET youth partners with disabilities. This video made its debut at Science and Family Day 2017, successfully proving that young adults with CP can lead busy, productive, and engaged lives.

Looking to the future: although, we’ve had a lot of success sharing our work––and being a resource––online far and wide through the creation of videos and webinars (i.e. CP and Mental Health), we’re still working to find the best way to steam our events; making them accessible to anyone who is interested in participating, regardless of location.

Bringing It All Together

A direct benefit of the connections CP-NET is forging between children with CP, their families, clinicians, and scientists is the creation of a large Clinical Database. The Clinical Database consists of five distinct platforms: Clinical Risk Factor, Neuroimaging, Genomics, Neurodevelopmental, and Psychosocial/Participation Platforms. Together, the platforms bring together comprehensive information about risk factors, genomics, brain development, participation and more. Researchers within these platforms are connecting with families of children between the age of 2 and 8 from locations across Ontario in order to collect a breadth of information related to the five platforms.

The Clinical Risk Factor platform is gathering information about factors that may put a child at risk of developing CP. Detailed health data is being collected from child and maternal health records, complemented by parental interviews. The ability to look at this information on a large scale has the potential of providing researchers with clues as to what causes CP. To date, information has been collected on antepartum, intra-partum and post-partum causes; then organized according to type, severity, and co-morbidities of CP for optimal usefulness among clinicians.

The Neuroimaging platform is collecting brain images. Most children living with CP will already have had a brain image created as a part of routine checkups. Rather than creating a new brain image for each participating child, the platform seeks permission to examine existing images in their health records. Images are then read by a neuro-radiologist who looks for patterns in brain activity that could provide clues about the causes and treatments of CP.

The Neurodevelopmental platform collects information on the development of children with CP, such as how they are moving and speaking. This information helps us to better understand the everyday lives of children with CP.

The Genomics platform investigates changes in DNA that may make some children more susceptible to developing CP. By using gene chips or microarrays, Richard Wintle and his team have found deletions and duplications that impact gene function. A quarter of children with CP may have changes in their genome that are medically relevant and can impact their care. Although these changes are usually inherited, seven percent can occur during early development. Changes in genes can impact the way in which a child is cared for in a clinic; therefore, it is important that research findings are communicated to doctors who can then inform the patient.

The Psychosocial & Participation platform takes an even deeper look at the daily life of children with CP. This includes interactions with family, friends, classmates; as well as, hours of sleep per night and level of pain that may be experienced during these activities of daily life.

All of the data collected within these five platforms answer not just one research question, but enables CP-NET to be nimble and answer many different questions that will help to further our understanding of people with CP.