The ALS Canada Research Program

Finding new treatments that can change the course of ALS requires a robust research program, one that supports a large community of researchers exploring multiple avenues of inquiry. ALS Canada has been supporting world-class research across Canada for more than 30 years with a variety of grants and awards that are helping to learn more about how ALS works in the body with the goal of making ALS a treatable, not terminal disease.

It is an exciting time in ALS research: the amount of activity and discovery has increased more in the last five to seven years than in the last century – to the point that there are more projects, ideas and tools to explore than funds available, particularly in the case of the ALS Canada Research Program which is supported entirely by donor dollars (including the Ice Bucket Challenge) and partnerships with provincial ALS Societies. With limited funds available, ALS Canada must be able to make the most of them.

“ALS Canada uses a comprehensive peer-review process to decide which projects receive funding, ensuring that donor dollars will have the maximum impact to advance learning in the field,” said Dr. David Taylor, Vice President of Research at ALS Canada during a webinar presentation on July 20, 2017. The webinar focused on the history of the ALS Canada Research Program, the different types of grants available, and the status of the research program today.

Over the past several years, donations raised through the Ice Bucket Challenge have boosted the amount that ALS Canada Research Program has been able to direct to grants and awards, which previously averaged $1.5 to $2 million per year. In 2016, ALS Canada awarded $3.5 million in research grants, $2.7 million of which was matched by the Brain Canada Foundation through the Canada Brain Research Fund (with the financial support of Health Canada) for a total of $6.2 million.

The ALS Canada Research Program: A brief history

In 1977, a neurologist named Dr. Arthur J. Hudson in London, Ontario, co-founded ALS Canada to provide supportive care for people with ALS and their families. He also established the country’s first multi-disciplinary clinic where people with ALS could see a neurologist as well as speech pathologists, dietitians, respirologists and other specialists. The research program started slowly in the 1980s when ALS Canada began awarding small grants of a few thousand dollars. By 1999, the program included multi-year grants that encouraged new researchers to enter the field, and it continued to evolve with an expanded range of grant programs that set the stage for the ALS Canada Research Program as it exists today.

In 2017, ALS Canada is funding research grants and awards through three separate competitions:

  • The ALS Canada – Brain Canada Arthur J. Hudson Translational Team Grant was created in 2014 and is currently a partnership between ALS Canada and Brain Canada. In 2017, this grant will help to accelerate the development of effective ALS treatments by providing up to $1.8 million to teams of three or more researchers from at least two institutions, fostering collaboration and promoting the sharing of information. Since 2014, over $18 million dollars in Hudson Grants have been awarded thanks to the generosity of Canadians through the Ice Bucket Challenge.
  • ALS Canada Trainee Awards support Canada’s emerging ALS researchers, whether they are doctoral students, post-doctoral researchers, or clinical research fellows. Trainee awards are instrumental in encouraging young researchers to choose ALS as their area of focus – helping to ensure that Canada has a strong community of talented ALS researchers. Successful recipients receive salary support awards appropriate for their level from a minimum funding pool of $200,000.
  • ALS Canada Project Grants support a range of promising research projects, including those at an early pilot stage that need seed funding to obtain initial data, those focused on improving the symptoms or experience of someone living with ALS, or those projects that are well established, but have not been successful in securing one of the very limited awards given by the Canadian Institutes of Health Research, the primary health research funding agency of the Canadian federal government. Project grants are designed to fund the best ALS work in Canada that will have significant impact on the global effort to understand the disease and find new ways to treat it.

Deciding which research projects to fund

Simply put, there is more ALS research to fund than money available – making it necessary for ALS Canada to have a proven method for making difficult decisions about which research receives funding. ALS Canada has always awarded funding based on a peer review process that is continually evolving and being optimized. Known within the scientific community as the gold standard for assessing all types of research, peer review engages independent experts in evaluating the quality and rigour of research papers and proposals.

For ALS Canada, the awarding of grants begins with an invitation to the Canadian ALS research community to submit their research proposals. Information about funding opportunities is publicly available on the ALS Canada website and includes eligibility criteria and application deadlines. ALS Canada reviews all applications to ensure they are eligible and complete before they are moved on to the next phase.

Next, ALS Canada recruits panels of experts in ALS and other neurodegenerative diseases to review the proposals. In order to engage experts who don’t have a connection to any of the proposals being reviewed, it is common to recruit panel members from beyond Canada. To enable panel members to freely critique research proposals, their names are not disclosed.

The panel meets to discuss the merits of each submission in detail after which all panel members assign a score to the proposal. ALS Canada Board representatives and senior staff observe the process, along with at least one person who is living with ALS, but they do not participate in the discussion or scoring. The average scores are ranked and the top proposals are considered for funding. The panel then determines the list of projects they recommend for funding to the ALS Canada Board of Directors.

Finally, the ALS Canada Board of Directors reviews the panel’s funding recommendations to reach a funding decision. The goal is to fund as many project as possible based on the research dollars that are available in a given year. ALS Canada notifies all applicants as to whether their proposals were successful, and provides feedback to unsuccessful applicants so they can strengthen their proposals if they wish to re-apply in the future.

While the peer review process is not without its downsides – a common criticism is the length of time the entire process takes – it is a proven, well-respected and internationally recognized approach. ALS Canada continues to review its approach to research funding so we can be responsive to new and emerging opportunities.

Read more about the ALS Canada Research Program and consider making a donation today.

Posted in: Research