It’s been over a year since the final workshop of our neurodevelopmental disorder Priority Setting Partnership (PSP). This seminal moment marks the day when patients, family members, and front-line care providers came together and reached consensus on a top 10 list of research priorities for the research community. While all PSP initiatives culminate in a final workshop, we’ve been working hard to spread the word about the top 10 and address the community’s priorities. We have reached tens of thousands of people through media coverage, presentations, and social media promotion which has been greatly amplified by our partners. Continue reading “After the top 10: bringing the community priorities to life”
Ontario has one of the highest concentrations of brain researchers anywhere in the world. But researchers in this community largely worked in isolation and tended not to share ideas or data. The Ontario Brain Institute’s (OBI’s) Integrated Discovery Programs changed this and brought large groups of researchers together to better understand and treat brain disorders. This collaborative approach led to the idea of standardizing data and housing it in a shared space where it is curated, analyzed and shared. This ensures that the data are collected in the same manner, making it easier to share and accelerate discovery. Continue reading “Brain-CODE Offers First Open Data Access”
OBI’s Integrated Discovery Programs bring together over 200 core researchers and clinicians, 35 institutions, 40 companies, and 20 patient advocacy groups from across Ontario.
Read about their latest news and progress in the updates that they have provided. Continue reading “Research Updates”
While autism, epilepsy, or depression may at first seem worlds apart, there is benefit in studying these and other brain disorders together. Each condition has unique traits, but there is often overlap. For instance, people living with autism may experience depression and people living with cerebral palsy may have seizures. Brain research is inherently complex – different disorders may share similar underlying causes and similar disorders may have very different underlying causes. Although this makes things complicated, it also creates an opportunity to borrow insights from one disorder to inform research into another disorder. Continue reading “Expanding The Borders Of Research Through Cross-Disorder Collaborations”
What do you see when you think of autism? Up until recently, I would picture early intervention with children. But what happens once those children grow up? While early intervention and services for children are important, the needs of adults living with autism spectrum disorder (ASD) have gone somewhat unnoticed. Children with ASD grow up to be adults with ASD, and continue to have needs that require supports and services.
Continue reading “Autism Across the Lifespan”
One of OBI’s major goals is to facilitate collaboration between patients and their advocates, researchers, clinicians, and industry to improve outcomes for those affected by neurodevelopmental disorders. One of the best ways to do this is simply to bring people together which is one of the reasons why OBI’s Integrated Discovery program, the Province of Ontario Neurodevelopmental Disorders (POND) Network, held a parent information day on May 3, 2014 to engage in dialogue with the parents and family members of children participating in POND.“I now know many of the researchers involved in POND very well. The day gave us insight into how they work together and share an interest in the POND network and POND philosophies,” explained Connie Putterman, a parent representative on the POND Patient Advisory Committee. Continue reading “Connecting Families With The Research Community”
Researchers are focusing on the individual to gain deeper insight into the common, underlying causes of neurodevelopmental disorders. Continue reading “A personal touch to understanding neurodevelopmental disorders”