• POND Network advances care for over 300,000 Ontario children and youth with neurodevelopmental disorders, taking cross-condition approach that studies shared biology across diagnoses and prioritizes questions identified by families
  • 15 years of POND research translates into provincial policy impact, with members leading Ontario Health's genetic testing guidelines and securing Ministry approval for accessible genome-wide sequencing across the province
  • Canada's first clinical trials network for neurodevelopmental disorders accelerates treatment development, including CALM Study examining sertraline for anxiety across eight sites while revealing that mental health, not original diagnosis, predicts quality of life

The Province of Ontario Neurodevelopmental Disorders (POND) Network is making significant strides to understanding neurodevelopmental disorders – or NDDs – and improving care for the more than 300,000 children and youth in Ontario living with autism, ADHD and other conditions.

In a field where the underlying biology of these disorders remains largely unclear, the POND Network, one of the Ontario Brain Institute's Integrated Discovery Programs, looks to children, youth and families to identify and prioritize important questions and then co-develops the research projects that will generate the evidence to impact care.

Unlike traditional approaches that focus narrowly on specific diagnoses, POND takes a cross-condition view of neurodevelopmental disorders, studying both shared and unique biology across multiple diagnoses and genetic syndromes. By collecting diverse types of data (genetic, molecular, imaging, behavioural) using standardized assessments, and integrating them on OBI's Brain-CODE platform, POND enables province-wide data sharing and collaboration between scientists, clinicians, and families, accelerating discovery and translating research into real-world impact.

In 2017, my son was diagnosed with autism. We accepted the label, but it didn’t explain everything. The following year, we joined a POND Network study, looking for more answers. By 2020, POND’s genetic testing revealed the pathogenic ASH1L diagnosis. For the first time, our confusion had a name, and our path had direction.

Mukti Reddy, President and Cofounder of Care4ASH1L & member of POND’s Patient Advisory Committee

As part of continued efforts to drive better outcomes for young people with these conditions, one of POND's latest studies examined Brain-CODE data from 615 children and youth, with an average age of about 11 years, to better understand what affects their overall well-being – physical, mental, emotional and social health. The troubling trend that emerged was that as children with NDDs get older, their quality of life often declines. However, it is not the original diagnosis that predicts quality of life but their mental health.

These findings highlight why POND places equal importance on behavioral, family background, and social factors when it comes to health and well-being, revealing important insights about patient experiences and supporting POND's mission to translate findings into clinical practice and policy.

Contributions to provincial genetic testing guidelines

Members of POND played a key role in Ontario Health's recommendations for genetic testing for NDDs such as autism spectrum disorder and intellectual disability. This document establishes principles for delivering standardized, evidence-based genetic services to individuals and families across the province.

The guide, published earlier this year, includes recommendations for evidence-based genetic testing in pediatric and adult settings. These guidelines represent the result of a decade of genomics research, in which scientists and clinicians from POND have played a significant role.

Dr. Danielle Baribeau, a clinician-scientist at Holland Bloorview Kids Rehabilitation Hospital, led the expert group that developed the guidance document. She explained: "We put together a proposal with the Provincial Genetics Program to make genetic testing in NDDs more accessible and done in house, in Ontario. Our proposal was approved by the Ministry of Health as of January 2025..."

Now genome wide sequencing can be ordered for families no matter where they live in the province, by the care teams that know them already. This is a huge step forward and a big win for Ontario.

Dr. Danielle Baribeau, a clinician-scientist at Holland Bloorview Kids Rehabilitation Hospital

A novel research approach

POND is leading international efforts that have fundamentally changed the approach to diagnosis and treatment of neurodevelopmental disorders. Their clinical trials network is a first in Canada and accelerates the development of effective medications and psychosocial interventions for patients and families.

A current example of this collaborative model is the “Calm Study,” a randomized placebo-controlled trial of sertraline versus a placebo in the treatment of anxiety in children and adolescents with neurodevelopmental disorders. The trial involves eight sites across Canada, from Toronto to Halifax, examining whether a drug typically used for depression and post-traumatic stress disorder can effectively treat anxiety in young people with NDDs.

POND's work demonstrates how large-scale, collaborative research can contribute to evidence-based policy development and clinical understanding. The network's integration of clinical data through Brain-CODE, as well as its collaborative methodology uniting scientists, clinicians, and families, has enabled researchers to study these conditions with unprecedented scope and detail.

Impact and Looking Forward

POND's 15 years of research is translating into tangible benefits for Ontario families. From informing provincial genetic testing guidelines that will streamline diagnosis, to revealing critical insights about quality of life that can guide clinical care, to developing new interventions, the network's approach is bridging the gap between laboratory discoveries and real-world improvements.

As POND continues to expand its clinical trials network and deepen understanding of these conditions, the research is moving beyond traditional diagnostic boundaries to focus on what matters most: helping children and families live better lives. Through this integrated strategy – combining cutting-edge science with family voices and clinical expertise – POND is not just advancing our knowledge of neurodevelopmental disorders but fundamentally changing how we support Ontario's children and youth who live with these conditions.

Learn more about POND