News

Metformin in CP Team Forms Stakeholder Engagement Committee

The Metformin in CP team is pleased to announce the creation of its Stakeholder Engagement Committee (SEC). The SEC was formed to provide a platform for collaboration, input, and guidance from various stakeholders specific to the CHILD-BRIGHT Metformin in CP research study.

The first SEC meeting was held at Holland Bloorview Kids Rehabilitation Hospital on February 7, 2019. The committee consists of 5 stakeholders with a wide range of lived experience in the cerebral palsy community, including three individuals diagnosed with cerebral palsy and two parents of children diagnosed with cerebral palsy.

The SEC members bring insights from previous involvement with cerebral palsy research including participation in pediatric research and research advisory committees, securing funding for basic and clinical cerebral palsy research, as well as years of experience in health journalism and research. One of our members, Jessica Geboers, had the following to say:

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“I am a journalist currently working as a communications officer at the University of Guelph-Humber in Toronto. As someone who has a moderate form of Spastic Diplegic Cerebral Palsy (CP), I am an active member of the disabled community and often use my journalism to advocate for and further the understanding of what it is like to live with a disability. When Dr. Darcy Fehlings invited me to join the Metformin for CP trial Stakeholder Engagement Committee, I was all too happy to accept and bring my experience to the table. I, like all of us, am excited by the possibilities that Metformin may hold for children and youth with CP, both now and in the future. There’s no magic pill to cure the challenges of CP, but every little bit helps as they grow and work towards their best lives.”

The inaugural meeting included all 5 stakeholders and the research teams from Holland Bloorview and The Hospital for Sick Children, and served as an opportunity to familiarize the members with the study design, aims and objectives. The committee members were already able to provide meaningful input that has since been integrated into the study design including how we can better communicate eligibility criteria to families to ensure their understanding as well as expanding on how the study pills can be administered (i.e. crushed via gastrostomy tube). The productive discussion began what we hope will be a fruitful collaboration between the research team, stakeholders, and the greater cerebral palsy community.

Learn more about the Metformin in CP project in our Report to Community.

Announcing the 2018 CHILD-BRIGHT Training Innovation Fund Winners

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We are pleased to announce the winners of the 2018 CHILD-BRIGHT Training Innovation Fund (TIF) competition, an initiative to facilitate the development of innovative training activities that will foster patient-oriented research training and mentoring within research projects focused on childhood brain-based developmental disabilities.

We received a number of strong proposals and following an in-depth review, the evaluation committee recommended two proposals for funding based on the impact that their proposed deliverables would have on increasing capacity for patient-oriented research within the CHILD-BRIGHT Network and beyond.

We congratulate the two following successful TIF winners:

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Project:

Learning Together: the use of simulation to enhance and enable authentic and meaningful research partnerships

Kathryn Parker

Kathryn Parker

Leads:
Kathryn Parker, Senior Director, Academic Affairs and Simulation Lead, Holland Bloorview & Nadia Tanel, Manager, Research Operations, Holland Bloorview

Funding amount granted
:
$9,979

Project timeline:
Jan-Dec 2019

Nadia Tanel

Nadia Tanel

Project summary:
The proposed project aims to develop a suite of five simulation-based learning modules designed for multi-stakeholder research teams that include patients/families as partners. Adopting a co-learning approach, these modules will be designed to address complex challenges experienced by patients and scientists while engaging in patient-oriented research.

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Project
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Development of a partnership model for collaborative research with youth with disabilities

Gail Teachman

Gail Teachman

Lead:
Gail Teachman, Assistant Professor, Western University

Funding amount granted:
$10,000

Project timeline:
Jan 2019-Jan 2021

Project summary:
The project aims to pilot a model for meaningfully engaging youth with diverse disabilities as collaborators in an integrated knowledge translation (iKT) research project. This project will actively engage youth collaborators as well as other stakeholder groups in the creation of training modules that train health care providers to approach childhood disability as an interaction between physiological and social determinants of disability.

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Congratulations!

2017-18 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2018 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

CHILD-BRIGHT Principal Investigator Featured on CTV W5

Watch CTV W5 & meet Dr. Jan Gorter, Director of CanChild & Principal Investigator of CHILD-BRIGHT's 'READYorNot' Moving Ahead with Transition of Care from Adolescence to Adulthood project & learn why his work trying to address the gap in transition from paediatric to adult care for children with disabilities in so important in Canada.

The families of severely disabled children dedicate their lives to nurture and protect them, but what happens when the funding and services they rely on are cut off? W5's Sandie Rinaldo investigates the uncertain future faced by disabled children when they become adults.

2016-17 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2017 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

Where does the money go? TEDxYorkUSalon talk by Wendy Ungar on Health Econonics

Wendy Ungar, Co-Lead of CHILD-BRIGHT's Health Economics team, Senior Scientist at SickKids and a Professor at the University of Toronto, presented a Researcher Lightning Round talk following the TEDxYorkUSalon AutismInnovations on April 22, 2017 on the science of Health Economics. Watch 'Where does the money go? Shifting the curve in early autism intervention'