An important set of resources designed to link BC researchers with those affected by autism spectrum disorders have been made public today. The Pacific Autism Family Centre (PAFC), along with partners including Genome British Columbia (Genome BC), have issued new reports that examine the current landscape for autism research in BC and how to enable better understanding and collaboration between all aspects of the research and patient communities.
“Genome BC is dedicated to bringing societal and economic benefits to British Columbians,” says Dr. Gabe Kalmar, Vice President Entrepreneurship and Commercialization at Genome BC and co-chair of the Autism Research Steering Committee. “Genomics is at the cutting edge of science and we believe that this technology will have significant impacts on the role of diagnosis and management of autism so our role is complementary to the strengths being brought together in this initiative.”
The dialogues and activities gathered into these reports represent the first step towards improving collaboration and synergy in autism spectrum disorder research in BC as well as championing of patient and family needs.
The family’s viewpoint: asking families what they need from research
One of the PAFC’s primary aims is to connect the needs of families with autism research. To better understand these needs, the health design lab at Emily Carr University of Art and Design and the PAFC Foundation hosted a series of workshops with families. Together, researchers and families identified 12 main areas where families would benefit from additional research.
“[We] create linkages between the needs of individuals with autism spectrum disorders and their families and the research and innovation communities,” says Sergio Cocchia, President of the Pacific Autism Family Centre Foundation. “Understanding and communicating those needs through an inclusive dialogue across our province and beyond is fundamental to everything we do.”
Helping the PAFC develop its research vision
Engagement with the BC research community is part of the PAFC’s vision to be "informed by research and to inform research". To further this goal, members of the committee held a “BC Autism Research Blue Sky Meeting” on January 29, 2016.
The session aimed to help researchers with an interest in the autism spectrum disorder field to:
- learn more about the PAFC and its vision;
- develop a common understanding of current research on autism in BC; and
- engage in a discussion of the opportunity for autism research connected to the PAFC.
Short presentations from researchers focused on topics ranging from genetic studies to therapies to population health. Breakout discussion groups allowed attendees to identify similar and complementary expertise, opening the door to collaboration.
Findings from the day have been summarized in a report on the proceedings.
Mapping the autism research landscape
To help guide future planning exercises aimed at reducing the health and economic burden of autism in BC and beyond, an Asset Map of Research Resources for Autism Spectrum Disorders was produced. It provides a snapshot of BC assets in the field.
Key findings of the asset map show that BC has the following autism research assets:
- at least 58 researchers and 21 trainees
- eight Canada Research Chairs
- strength in psychosocial/behavioural research
- at least eight research networks and centres of excellence, including NeuroDevNet NCE
The report highlights existing BC strengths in the autism field, as well as potential gaps and collaborative opportunities within BC and beyond. The report also includes a list of autism researchers, research networks, and centres of excellence in BC.
Connecting PAFC to the research community
The PAFC, currently under construction and opening in fall 2016 in Richmond, will bring together resources for research, information, learning, assessment, treatment, and support, to help address the needs of those affected by autism spectrum disorder across BC.
Next steps include the development of a research initiative called “Inform Every Autism” that will provide advice on how the PAFC can continue to enhance interactions with the research community going forward. Inform Every Autism will also supply information on research results to create outcomes that best serve individuals and families affected by autism spectrum disorder.
This collaborative effort by the ad hoc Autism Research Steering Committee includes members from Genome BC, the BC Institute of Technology, Child & Family Research Institute, Emily Carr University of Art and Design, Pacific Autism Family Centre Foundation, the Michael Smith Foundation for Health Research, BC Ministry of Children and Family Development, University of Victoria, and University of British Columbia.