ALS Canada and Brain Canada join forces with Alnylam Pharmaceuticals and Regeneron to support a collaborative platform that will unite ALS researchers and accelerate breakthroughs.

Together, Brain Canada and ALS Canada are pleased to announce the awarding of a $2,850,000 2019 Platform Support Grant (PSG) to Dr. Sanjay Kalra and team for the Comprehensive Analysis Platform To Understand, Remedy, and Eliminate ALS, or CAPTURE ALS. Funding will support the collaboration between researchers across Canada and people living with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disease resulting in progressive paralysis and eventually the loss of the ability to move, speak, and breathe.

ALS is a heterogeneous disease, meaning the disease varies from person to person. Understanding why ALS is different in each person – or the clinical variability of the disease – is vital in effectively treating ALS. Led by a team of world-renowned basic and clinician ALS scientists, CAPTURE ALS has been designed to contribute to the global effort to understand ALS, ultimately increasing clinical trial efficiency and accelerating ALS therapy development.

CAPTURE ALS is a national platform that unites patients, researchers, and physicians to provide the systems and tools necessary to collect, store, share and analyze substantial amounts of information about ALS, creating the most comprehensive biological picture of people with ALS ever. Using advanced analysis methods, CAPTURE ALS will combine all the data collected from patients with ALS and healthy individuals with a goal of identifying unique subtypes of ALS and to provide insights that will inform personalized medicine efforts in the future.

“Participants will be followed regularly to examine the progression of their disease. They will answer questions about their symptoms, undergo brain scans, cognitive and speech testing, and have blood, urine and spinal fluid collected,” explains Dr. Kalra, professor in the Division of Neurology at the University of Alberta. “We are grateful for this support as it facilitates and enables access to an abundance of information that will lead to improvements in ALS treatments on a global scale.”

Through Open Science, the data and participant samples collected by CAPTURE ALS will be securely shared with researchers across Canada and the world to help understand the causes of ALS, the variability that exists between patients, and help identify new treatments.

“Many brains are better than one,” says Dr. Viviane Poupon, Brain Canada President and CEO. “When we invest in platforms that convene the research community, we are bringing together experts in the field and enabling science to move a lot quicker.”

Brain Canada’s Platform Support Grants are awarded to teams that are creating and/or enhancing centralized shared resources to increase access to equipment, expertise, data, and protocols across research networks. This year, Brain Canada has awarded nine Platform Support Grants to Canadian research teams, as part of a more than $25 million investment in brain research.

Funding for the Platform Support Grant awarded to CAPTURE ALS is made up of a $950,000 contribution from ALS Canada, a contribution of $237,500 from Alnylam Pharmaceuticals, a contribution of $237,500 from Regeneron, and $1,425,000 from Brain Canada through the Canada Brain Research Fund (CBRF). The total funding support for this collaborative research project amounts to $2.85M.

“Understanding the differences in ALS is vital to unlocking promising therapeutic targets that will one day help us achieve a future without this devastating disease,” notes Tammy Moore, CEO, ALS Canada. “We are proud to be a part of this exciting collaboration to invest in open science research that will transform the way we understand ALS, conduct future clinical trials and develop new treatments for ALS.”

The CAPTURE ALS team includes; Drs. Christine Vande Velde, Angela Genge, Nicolas Dupré, Janice Robertson, Tania Bubela, Wendy Johnston, Ekaterina Rogaeva, Lorne Zinman, Russ Greiner, Yana Yunusova, Alan Evans, Yasser Iturria Medina, and Kelvin Jones. In addition, David Taylor, VP Research at ALS Canada and project managers Claire Magnussen, and Hannah Kaneb serve on the platform’s executive committee.

This Project has been made possible with the financial support of Health Canada, through the Canada Brain Research Fund, an innovative partnership between the Government of Canada (through Health Canada) and Brain Canada, ALS Canada, Alnylam Pharmaceuticals and Regeneron.

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