Social Policy in Ontario

Integrated research offers hope for answers about autism

Posted on November 26, 2012 in Health Debates

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TheStar.com – Opinion/EditorialOpinion
November 26, 2012.   Dr. Donald T. Stuss

Can autism be cured?

Not yet. But that doesn’t make it incurable.

Parents of Canada’s one in 88 children afflicted with autism have frantically asked in the Star’s series: “Was it something they did? Was it a toxin in the environment? Smoking? A microbe? An infection during pregnancy? The age of a parent at conception, or the use of fertility treatments?”

Ever since the 1990s, when the study of our how genes affect our health became a major focus of medical research, genetics has played an ever-larger role in the search for the causes of brain disorders like autism. And of course, it’s only when those causes are known that the search for its cure can begin in earnest.

As the Star’s Autism Project noted: “Autism is rooted in genetics, this much is certain.”

The answer to autism has a better chance of being found sooner rather than later because of a new way of looking at research that’s pioneered in Ontario and already drawing attention internationally.

POND stands for the Province of Ontario’s Neurodevelopmental Disordersnetwork. POND is not so much an avenue of inquiry, but a way of looking at all the different approaches to finding a cure for autism and other developmental brain disorders. It’s a new system of gathering and transferring knowledge created to find treatments and cures faster and more accurately for our most devastating disorders.

Until now, much research has ended up siloed and competitive rather than integrated and collaborative. POND brings together teams of scientists, doctors, engineers, patient advocacy groups and biotech companies to create a network for clinical trials across Ontario that specializes in childhood neurodevelopmental disorders like autism. Many different brain disorders have overlapping symptoms and genetic patterns — this integrated approach, which even breaks down the silos between disorders, provides a unique opportunity to understand and treat the core of a disorder.

POND is already using new technologies in genomics, imaging and biomedical engineering to tease out the secrets of the biological mechanisms that contribute to autism. The results of those experiments, and collaboration with centres of excellence such as NeuroDevNet, will create faster, fuller and better understanding of the root causes of the “epidemic of autism” afflicting Canadians.

But POND’s second goal is to take that understanding and transform it more quickly into therapies and treatments ranging from drugs, to devices, to psychosocial interventions that don’t exist today.

The success of POND rests on another Ontario initiative called Brain-CODE. All of the data in POND will be entered into this data bank, creating the opportunity to find treasures of knowledge that don’t exist in small databases. A similar approach should be extended to other brain disorders. If you can study, ultimately, 100,000 Ontarians with brain disorders, we believe you’ll be able to tease out many more relationships within all their data than if you were studying 100 or 1,000 Ontarians.

This is the kind of Big Data you see in the world of commerce translated into the world of science. It’s also the kind of Big Data you see in the world of science being translated into the world of patient care. By analyzing huge new databases in new ways, scientists can discover new relationships, generate new ideas about the causes of autism, examine them much more deeply and quickly and create much more targeted new therapies.

The Ontario Brain Institute, a province of Ontario initiative, funds both POND and Brain-CODE. They (and we) are part of a new way of looking at brain disorders across Ontario and worldwide.

It will take some time for POND and Brain-CODE to generate tangible results. One of the challenges is to ensure patient confidentiality when health records are explored to reveal common patterns. But we’re doing science differently here as well: the Ontario Brain Institute is the first research organization in the world to receive “Privacy by Design” Ambassador status from the Office of the Information and Privacy Commissioner of Ontario.

All of these initiatives are happening because of an urgent need: brain disorders today cost Ontarians more than $39 billion in terms of treatment and lost productivity. Just a decade from now, that cost will rise exponentially unless we make the kind of breakthrough discoveries that will turn deadly disorders into chronic ones, and chronic disorders into disorders of the past.

Dr. Donald T. Stuss is president and scientific director of the Ontario Brain Institute.

< http://www.thestar.com/opinion/editorialopinion/article/1293542–integrated-research-offers-hope-for-answers-about-autism >

Tags: disabilities, Health, mental Health, standard of living, youth

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