Researchers around the world are gaining access to new data, to help investigate and treat pediatric neurological conditions.
The digital platform, run by the Ontario Brain Institute (OBI), is playing a key role in open science and brain health research with the release of new clinical information.
“Brain-CODE is much more than a data base, it’s basically an ecosystem or a way of doing business to standardize and share data,” said Dr. Tom Mikkelsen, president and scientific director of OBI.
Data from more than 3,000 children and youth impacted by neurodevelopmental disorders, such as attention deficit hyperactivity disorder and autism spectrum disorder are on the digital platform called Brain-CODE.
Allowing access to scientist and researchers from around the globe to the data puts more eyes on a problem in hopes of finding a solution faster.
“We’re able to aggregate datasets to get the answers first of all more quickly and also be able to apply new minds and new ways of thinking,” said Mikkelsen.
The data will help those looking to better understand how brains and bodies affect behaviours of children and teenagers like Austin Cosgrove. The talented 17-year-old artist has autism, ADHD, OCD, and anxiety.
“It messes up somethings in my life that I wish it didn’t and I get frustrated really easily. I get angry and I don’t really know why,” said Cosgrove, whose two brothers are also on the autism spectrum.
All three of the Cosgrove children are among the 3,000 participants who work with Ontario doctors and have their information shared on the digital platform.
“Makes it really cool and knowing that I could be a part of something way bigger,” said Cosgrove, when asked about the medical assessments being shared with researchers around the world.
The standardized and curated data includes things like a patients demographic, medical history, and behavioural and cognitive assessments from research conducted by a team at the Province of Ontario Neurodevelopmental Network.
Now the platform includes imaging, like MRIs from children and youth, some diagnosed with various neurodevelopmental disorders and others typically developing.
Dr. Evdokia Anagnostou, who is a child neurologist and assistant director of the Bloorview Research Institute, has been in this field for nearly 20 years. She says this time it’s not about collecting the data and research, it’s about releasing it.
She knows it will take a bigger community to answer difficult questions.
“We are proud of the work we do but we are also proud of the fact that we believe in democratizing knowledge and sharing what we’re learning with everybody else so that we can all go to the goals faster,” said Anagnostou.
Doctors hope this program and the global collaboration will help to break down barriers and bureaucratic obstacles and lead to the development of more personalized treatment for people and their families.