The Issue

In Canada, people living with ALS face significant barriers to participating in clinical trials and research that could expand our understanding of the disease and contribute to scientific discoveries. These barriers are even more significant for Canadians living in rural, northern, and underserved regions. This inequity stems not from Canada’s lack of scientific expertise or the infrastructure, but rather from chronic underinvestment in ALS research by the federal government.

In contrast, foreign governments, such as the United States, Australia, and the United Kingdom, recognize the critical need for substantial investment in ALS research and commit significant resources to drive advancements that will yield transformative impacts. Despite having the potential to become a leader in ALS research, Canada has yet to make comparable investments.

The continued inaction by the federal government is measured in missed opportunities and lives lost. Bold federal leadership and investment are urgently needed to scale existing initiatives, unify efforts nationwide, and offer hope for a world free of ALS.

Our Solution

In response to this urgent issue, ALS Canada brought together researchers, clinicians, people living with ALS, caregivers, and patient organizations from across the country for the National ALS Research Summit to chart the path forward and build a unified approach to ALS research in Canada

The result is the Canadian Collaboration to Cure ALS: a unified, coordinated strategy that will scale three high-impact Canadian initiatives – CAPTURE ALS, The Canadian Neuromuscular Disease Registry (CNDR), and The Canadian ALS Research Network (CALS) – representing Canada’s strongest opportunity to lead in the global pursuit of a cure for ALS.

We are calling on the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS, aiming to unify and scale Canada’s ALS research efforts so that no Canadian is left behind.

The Canadian Collaboration to Cure ALS brings together three existing, interdependent initiatives:

CAPTURE ALS: unlocking the biology of ALS ($35 million over five years)

CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is an open-science platform that revolutionizes our understanding of the disease through the collection of biological data to answer one of the most urgent questions in ALS research: Why does ALS affect each person differently?

CAPTURE ALS integrates clinical data, imaging, genomics, and biosamples to uncover the biological factors driving these differences, paving the way towards biomarker discovery and therapeutic targets that will slow disease progression.

With investment from the federal government, CAPTURE ALS will:

  • Allow the platform to expand from 4 to 12 ALS research-ready sites across the country.
  • Position Canada as a global leader in ALS research.

Canadian Neuromuscular Disease Registry (CNDR): Advancing ALS care and research through real-world data

A comprehensive system to track ALS in real-world settings is crucial for our ability to gather critical patient data that will improve clinical care and guide public policy. The Canadian Neuromuscular Disease Registry (CNDR) follows people living with ALS from diagnosis onward, collecting key demographic and medical data, including postal code, date of birth, diagnosis timelines, and occupation, to understand how ALS progresses.

The registry provides real-time insights into treatment decisions and clinical trial participation, supporting evidence-based clinical decisions.

With investment from the federal government, the CNDR will:

  • Ensure every Canadian diagnosed with ALS can enroll in the registry and benefit from a coordinated approach to ALS care and research.
  • Enable evidence generation for research and drug access.
  • Uphold Canadian data sovereignty and privacy.

The Canadian ALS Research Network (CALS): Improving equitable access to ALS clinical trials

Participation in clinical trials is often the only opportunity for people living with ALS to access emerging therapies. Yet in Canada, access to clinical trials remains a significant barrier, particularly for those in rural and remote areas, who often face challenges in both contributing and benefiting from them. It is crucial to improve access to clinical trials and research for people living with ALS to ensure every Canadian living with ALS can participate in research closer to home. The Canadian ALS Research Network (CALS) is uniquely positioned to address this gap. CALS is a network of clinicians across Canada who specialize in ALS research and clinical care, that are known for attracting global trials to Canada. With investment from the federal government, CALS will:

  • Create more opportunities for Canadians to participate in and benefit from clinical trials and research closer to home.
  • Strengthen Canada’s ability to lead and attract global trials.
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