Be part of ALS research
Interested in being part of the ALS research that is happening today? Often there are opportunities to be involved in testing new therapies or to contribute your biological information so researchers can learn more about the disease.
ALS clinical trials
Clinical trials are research studies that use human volunteers to test new therapies. After scientists test experimental treatments in the laboratory, those with promising results move to clinical trial to determine whether the therapy is safe and effective for use in humans. A new therapy must successfully pass through a series of phases before ultimately being approved by Health Canada and being made available to the Canadian public. This process can often take years because strict protocols and processes are in place to ensure that new treatments are ready to be prescribed for people with as little risk as possible.
In general, ALS clinical trials are therapeutic or observational.
Therapeutic clinical trials test new drugs, therapies or devices that aim to either slow the progression of the disease or help to manage symptoms.
Observational trials aim to learn more about the disease and are essential to understanding, diagnosing, and ultimately treating ALS.
In many cases people who participate in clinical trials will not benefit from the therapy, but their generous involvement will help to find a successful therapy for those diagnosed in the future. One day, a clinical trial will likely test a treatment that slows the progression of ALS and those involved may directly benefit from taking part.
The goal of a clinical trial is to answer questions like these:
- What is the best way to give the treatment?
- Is the drug safe?
- Is the drug tolerated and at what dosage? Is the drug effective? (that is, is the drug actually changing the expected course of the disease in patients receiving the drug, compared to others who are not receiving it, and how much difference is there?)
Learn about ALS clinical trials in Quebec
ALS patients in Quebec and the friends and family who support them now have access to a new resource to learn about clinical trials available to them.
Clinical Trials Quebec (CTQ) is an information and services hub for all things clinical research, powered by the CATALIS Network and developed in partnership with the Quebec government. CTQ is an innovative provincial tool that provides high quality, complete, neutral, and accessible information on clinical research, as well as free services that improve access to clinical trials. These include the Personalized Support Service, which helps patients, caregivers and medical professionals find clinical trials that match their criteria, and Quebec’s Public Clinical Trials Database, which enables users to search for clinical trials conducted in Quebec, Canada, or around the world.
To make a free request to the Personalized Support Service, visit the Clinical Trials Quebec website or contact a member of their team:
Canadian Neuromuscular Disease Registry (CNDR)
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with neuromuscular diseases including ALS.
It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies. Currently, more than 4,500 neuromuscular patients have registered from across Canada. ALS patients can register themselves through the CNDR or can be registered through their ALS clinic. We recommend you speak with your ALS neurologist to discuss your eligibility and the opportunity to contribute.
CAPTURE ALS brings together patients, physicians and researchers to help understand why some people develop ALS and others do not.
It is a unique way for people to contribute to building knowledge about the disease. People who choose to participate in CAPTURE ALS will periodically have a neurologist examine the progression of their disease, answer questions about their symptoms, undergo MRI scans, cognitive and speech testing, and contribute blood and spinal fluid (optional). By collecting, storing and analyzing vast amounts of information about ALS and comparing it with data and biological samples from people who do not have ALS – who are also eligible to participate – CAPTURE ALS will create the most comprehensive biological picture of people with ALS.
CAPTURE ALS is currently recruiting in Montreal and Quebec City.
Tissue, brain and spinal cord donation
In some parts of the province, it is possible to contribute to ALS research after death by donating biological tissue, the spinal cord, and even the brain.
Whether it is possible to donate the brain and spinal cord depends on several factors and can be a difficult subject for families to discuss. If this option interests you, we encourage you to speak with your neurologist for more information.
Content from “ALS clinical trials” adapted from the ALS Guide, which was published in 2019 as a joint project of ALS Societies across Canada.