Healthcare that is informed by research and patient insights is the most effective way to advance knowledge

This article was originally published on September 3, 2019 by the Azrieli Foundation in celebration of their 30th anniversary.

Source: The Neuro

The Neuro (Montreal Neurological Institute-Hospital) was founded on this belief and continues to be an optimal environment for a continuum of research and care.

The Neuro opened in 1934 with Dr. Wilder Penfield at the helm as its founder and first Director. His work would revolutionize our understanding of the human brain.

Penfield had a holistic view of health care that would become the foundation for ongoing innovation at The Neuro and beyond. He wanted to create an institute where clinicians and scientists from different disciplines would work side-by-side. He also recognized that patients were integral within the health care continuum, not simply as passive participants.

This integrated approach is embedded in the Azrieli Centre for Autism Research (ACAR) and the Transforming Autism Care Consortium (TACC), both housed at The Neuro, and it is changing lives.

Lifting the shroud of mystery surrounding autism spectrum disorder

The Neuro is led by renowned neuroscientist Dr. Guy Rouleau. Rouleau is also Co-Director, with Dr. Mayada Elsabbagh of ACAR, where the goal is to improve the quality of life for people with autism and their families.

The team at ACAR have developed a comprehensive program for autism treatment, connecting research from bench to bedside. Their approach has great potential to move the needle in a significant way to deliver research and knowledge for autism services, education and quality of life initiatives.

ACAR has become such a successful hub for multiple approaches to autism research that it has seeded the creation of TACC – the Transforming Autism Care Consortium.

“Connecting complementary strengths and diverse perspectives through research is the most effective way to advance knowledge.” – TACC

Achieving collective impact

  • TACC is a vibrant network with over 400 members across Quebec including researchers, health care professionals and people with lived experience. The network is exemplary in providing opportunities for collaboration and partnership, and ultimately making a difference for families living with autism.
  • TACC has launched the Quebec 1,000 (Q1K) initiative that is currently integrating research infrastructure in provincial hospitals where families receive clinical services for autism and related conditions. By the end of 2024, Q1K will engage 1,000 participants and the clinicians who support them in research. The goal: to drive new discovery in autism, while helping ensure that people with autism and their families in Quebec receive the most up-to-date care.
  • ACAR and TACC’s approach are central to their success – a committed drive toward scientific discovery combined with an ongoing and active connection with the broader community. Their network of researchers understand that for individuals with autism spectrum disorder and their families, science is about hope. Navigating the journey of scientific discovery is turning hope into results.
We must never lose sight that people stand at the beginning and end of every scientific journey.

TACC Objectives
Quebec 1,000 Families (Q1K): Model the future of care

  • Build a unique tool in University Health Centres by compiling genetic, cellular, brain and behavioural profiles data in 1,000 families.

Integration: Connected inclusive framework

  • Connect researchers, clinicians, community and government to communicate and integrate research progress and discoveries

Capacity Building: Training and research translation

  • Launch programs to train exceptional students and offer professional development opportunities.
We must never lose sight that people stand at the beginning and end of every scientific journey.

While the future of autism research promises many exciting discoveries, we know that it is all about the people impacted by this work.

There is a great deal of work to be done to meet the needs of individuals with autism spectrum disorder, and it will take the combined efforts of philanthropists, patients and their families, researchers, clinicians and the government to achieve those goals.

January 20 2020