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:
“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.