Bloorview Research Institute scientists are experts in collaboration who bring together researchers, clinicians, families, and community partners to advance ground-breaking solutions for young people with disabilities

Federal research funding agencies have recognized the value of BRI-led research initiatives with a spate of recent grant announcements:

Virtual Hand-Arm Assessments for Children with Cerebral Palsy: Helping Us to Achieve Equity in Rehabilitation Care and Research

Dr. Elaine Biddiss – PEARL Lab and Dr. Virginia Wright – SPARK Lab

Grant: Canadian Institutes of Health Research

Co-investigators: Dr. Darcy Fehlings, Dr. Shannon Knights, Dr. Carolyn Hunt, Dr. Hana Alazem, Dr. Dayle, McCauley, Dr. Anna McCormick, Dr. Sarah Munce, Dr. Timothy Ross

Therapeutic intervention is key to optimizing hand and arm function in children with cerebral palsy (CP) – yet many families can’t access in-person therapy because of travel, time, or other socioeconomic constraints. Virtual therapy via phone or video could help, but it can be hard for therapists to assess hand/arm skills remotely.

Support is on the way: BRI scientists have launched a study to determine which hand/arm assessments can be done virtually with the end goal of developing training materials for clinicians and families.

“Hybrid models of care that offer a mix of virtual and in-person care can help break down barriers to accessing healthcare for families. Like in-person care, virtual care must be guided by reliable assessment,” says co-principal investigator Dr. Elaine Biddiss, senior scientist and director of BRI’s PEARL Lab. “Virtual assessments can be convenient for families and may be able to better capture children's activities in their everyday lives, but we need to know when and how virtual assessments can be used.”

The families of 100 children with CP-related hand/arm limitations will connect over Zoom with a therapist who will guide them through at-home hand/arm assessments involving standardized tasks, family-recorded videos of individualized tasks, and wrist-worn motion sensors. Results will be verified through additional Zoom and in-person sessions. The researchers will also interview families and clinicians for their perspectives on virtual assessments.

“Our goal is to ensure that we capture different aspects of hand and arm use and consider the diverse experiences of our participants,” says co-principal investigator Dr. Virginia Wright, senior scientist and leader of BRI’s SPARK Lab. “Verifying the reliability of virtual assessments is essential to the advancement of hybrid models of care that offer families therapeutic options in a setting that works for them.”

Learnings will be widely shared to guide the use and further development of virtual assessments in other areas of pediatric care.

Brain Circuits Underlying Attention Problems After Adolescent Concussion

Dr. Shannon Scratch – NOvEL Lab

Grant: Canadian Institutes of Health Research

Co-principal investigators: Dr. Benjamin Dunkley, Dr. Anne Wheeler

Co-investigator: Dr. George Ibrahim

As if the teen years aren’t challenging enough, teenagers are more likely than other age groups to experience long-lasting problems after concussion, such as foggy thinking and inattention. The impacts on daily life, including school performance, can be difficult.

Despite these concerns, there are no proven therapies for teens with these persistent symptoms. Brain stimulation therapy, effective in other brain disorders, has not been applied to concussion because of a gap in knowledge. This gap includes where the brain is injured by concussion and how this relates to thinking problems.

Research led by Dr. Shannon Scratch, a clinician scientist and director of the BRI’s NOvEL Lab, aims to fill that gap by using advanced brain scanning techniques (e.g., magnetoencephalography (MEG) and diffusion MRI) and tests of thinking in teens with persistent concussion symptoms.

“This approach will help us understand where structural injury and slowed brain function occur together in the brain and whether this co-location contributes to attention challenges,” she says. “From there, we can begin to identify areas of the brain that could benefit from brain stimulation therapies after concussion.”

The study will also test for gender differences in brain changes and attention issues, seeking clues for why teenage girls are more likely to have a longer recovery after concussion than boys.

Return to Play with R2Play: An Integrated and Inclusive Concussion Assessment for Youth

Dr. Shannon Scratch – NOvEL Lab and Dr. Elaine Biddiss – PEARL Lab

Grant: Canadian Institutes of Health Research

Co-investigators: Dr. Cheri Blauwet, Dr. Jeffrey Caron, Dr. Heather Colquhoun, Danielle Duplessis, Dr. Carolyn Emery, Dr. Isabelle Gagnon, Dr. Michael Hutchison, Dr. Nick Reed, Dr. Kathryn Schneider, Dr. Virginia Wright, Dr. Roger Zemek

Clearing youth to return to play after a sports concussion is tricky; because there are no assessments that mimic sport, clinicians must rely on simple memory and balance tests to make this complex decision – until now.

The R2Play assessment system, created at Holland Bloorview, presents and scores sport-like tasks using low-cost technology. Early in-house testing suggests it is fun and easy to use with great potential to inform return-to-play decisions. But will it work in the real world?

“R2Play is the only sport-like concussion assessment of its kind, and we’re ready to take the next step to move it from the lab into clinical practice,” says Dr. Shannon Scratch, who is co-leading a three-study initiative with BRI colleague Dr. Elaine Biddiss.

The first study will deploy R2Play at three Canadian concussion clinics to gather feedback on its value as a decision-making tool. The second study will evaluate the validity and reliability of R2Play scores by analyzing scores from healthy youth and those with a sport-related concussion. The researchers will also compare the R2Play results with traditional concussion assessments. The third study will adapt R2Play for para-athletes through stakeholder focus groups and feasibility testing in partnership with the Ontario ParaSport Games.

“We hope that this work will eventually lead to a new standard of care for youth after concussion that enables them to return to play safely with confidence,” says Dr. Biddiss.

We are Sexual Too: A Partnership to Support the Intimate Citizenship of Disabled Youth Across Canada by Mobilizing Knowledge About Sexuality and Disability

Dr. Amy McPherson – ProFILE Lab

Grant: Social Sciences and Humanities Research Council

Co-applicants: Dr. Alan Martino, Dr. Ann Schormans, Dr. Hilary Brown, Dr. Jonathan Leef, Dr. Loree Erickson, Dr. Shaniff Esmail, Dr. Shauna Kingsnorth

Other members of the research project are listed here.

BRI researchers are collaborating with disability and sexual health organizations on a three-year initiative to support the “intimate citizenship” of disabled youth.

What is intimate citizenship? Dr. Amy McPherson, senior scientist and leader of BRI’s ProFILE Lab, describes it as the rights of disabled youth to make their own decisions about their intimate lives, including with whom and how they are intimate.

“Society tends to take a biomedical approach to sexuality and disability, focusing on abuse prevention and risk reduction,” she says. “These are critically important – but so are the rights of disabled youth to create fulfilling sexual and intimate lives in ways that are most meaningful to them, such as a relationship or sexual exploration.”

Supports and resources for disabled youth on this topic are scattered and few. Dr. McPherson is leading a pan-Canadian partnership project in which disabled youth will join with researchers and 10 partner organizations to identify and harness existing expertise and resources around sexuality and intimate citizenship for disabled youth.

“This work will establish the foundation for our long-term goal to increase representation and support of disabled youth in sexual education across Canada and reduce stigma around sexuality, disability, and other intersecting identities,” says Dr. McPherson.