Canadian Collaboration to Cure ALS

CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is an open-science platform that revolutionizes our understanding of the disease through data biological collection 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 to pave 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 15 ALS research-ready sites across the country.
• Position Canada as a global leader in ALS research.

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 to support evidence-based clinical decisions.

With investment from the federal government, the CNDR will:

• Ensure every Canadian diagnosed with ALS can enroll into 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.

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. Canadians living in rural and remote areas often cannot contribute to and benefit from clinical trials. 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.

Phase 1 trials are the first time a new treatment is tested in humans. For people living with ALS, getting access to earliest stage of drug development is critical. Currently, only a limited number of Canadian sites can conduct these early-phase trials, leaving Canadians living with ALS with limited opportunities to access to research that could potentially lead to new treatments.

Access ALS will help close this gap. As national network of Phase 1-ready ALS clinical trial sites, Access ALS is designed to strengthen Canada’s capacity for innovative ALS clinical trials by providing a coordinated framework that streamlines trial start‑up, reduces redundancies, and improves efficiency.

In partnership with CALS, Access ALS will build a Canada‑wide system modelled on successful U.S. (NEALS) and European (TRICALS) networks, expanding Phase 1 trial capabilities and bringing more ALS clinical trials to Canada

With investment from the federal government, Access ALS will:

• Position Canada as a top destination for Phase 1 trials
• Build infrastructure that keeps promising ALS research in Canada, from early-phase trials through later stage development.

In August 2025, ALS Canada participated in the Ministry of Finance’s 2025 Pre-Budget Consultation process, calling on the federal government to invest $50 million over five years in the Canadian Collaboration to Cure ALS.

Read budget submission here

On October 1 and 2, 2025, Canada’s ALS community came together in Ottawa, for an Advocacy Day on Parliament Hill, with a powerful purpose: to advocate for a federal investment of $50 million over five years in the Canadian Collaboration to Cure ALS. 47 representatives from across Canada joined together to meet with Members of Parliament, Senators, and Bureaucrats, to call on their support for the Canadian Collaboration to Cure ALS.

Learn more about our Advocacy Day here.