Best practice recommendations establish national standard and address issues important to care in Canada

Toronto – The Ice Bucket Challenge continues to make an impact. Proceeds from the highly successful 2014 viral sensation have helped fund a comprehensive new resource to guide efforts to ensure people living with ALS in Canada receive the best possible care no matter where they live.

The first Canadian Best Practice Recommendations for the Management of Amyotrophic Lateral Sclerosis, published in the latest issue of the CMAJ (Canadian Medical Association Journal), recommends people living with the disease receive specialized multidisciplinary care, and addresses issues important to caring for people living with ALS in Canada, including timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD) and caregiver support.

ALS, also known as Lou Gehrig’s disease, gradually paralyzes people because the brain and spinal cord are no longer able to communicate with the muscles of the body that we are typically able to move at will. With four out of five people dying within five years of diagnosis in Canada, providing timely, optimal care from coast-to-coast is critical.

“These Best Practice Recommendations are an important step forward for improving the lives of people living with ALS in Canada. We hope they will help enable ALS clinics across the country to meet a common national standard, offering the best possible care to their patients and helping them navigate this complex and devastating progressive disease,” says Dr. Christen Shoesmith, Neurologist & Motor Neuron Disease Clinic Director at London Health Sciences Centre and Chair of the ALS Best Practice Recommendations Working Group.

With the new guideline, people living with ALS in Canada, their families and healthcare providers are also now empowered to make informed, collaborative decisions and advocate for optimal care consistent with best available evidence and expert consensus.

Until now, there have been no recommendations explicitly for the care of people living with ALS in Canada. Clinicians and care teams have relied on older guidelines published in the US and Europe, which do not address issues important to care in Canada.

“It’s critical that each person living with ALS, along with their family and caregivers – no matter where they live in Canada – have access to the best and most appropriate care for their disease,” says Tammy Moore, Chief Executive Officer, ALS Society of Canada. “That’s why it’s important that these guidelines reflect Canadian experience, values and the healthcare system. We congratulate the Working Group and everyone involved in developing this important resource that will help to improve the standard of care.”

A 13-member pan-Canadian Working Group developed the guideline’s more than 130 recommendations across 13 areas of focus to provide an update on evolving best practices of care in ALS. In doing so, they assessed hundreds of published peer-reviewed articles, and sought the input of people living with ALS in Canada, ALS Societies across the country, as well as other health providers and organizations.

Funding for the guideline was made possible through donations from the 2014 Ice Bucket Challenge and the Canadian ALS Research Network (CALS), a partnership of clinicians across Canada that specialize in ALS research and clinical care.

“We thank Canadians who enthusiastically supported the ALS community through the Ice Bucket Challenge which helped bring these recommendations to life. We continue to strive to make significant impacts with the ongoing generosity and support of Canadians coast to coast,” Moore continues.

About the ALS Canada Research Program and Canada’s ALS Societies
The ALS Canada Research Program funds peer-reviewed research grants and fosters collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. As the only dedicated source of funding for ALS research in Canada, the ALS Canada Research Program aims to accelerate research impact by providing funding for the best ALS projects focused on translating scientific discoveries into treatments for ALS. Collectively through initiatives like the Walk to End ALS, ALS Societies across Canada support the ALS Canada Research Program. ALS Societies across Canada work together to maximize our collective impact and make the greatest difference for people affected by ALS. Our approach as eight independent organizations working in partnership enables us to respond to the variation that exists between provincial healthcare systems, where we each play a role in filling gaps by providing community-based support. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for policy changes that will have a meaningful impact today and in the future.

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