ALS is different for everyone. Science still doesn’t know why.
Every person’s journey with ALS is different making it very challenging to study.
Cells and animals in the laboratory have helped us learn a lot about ALS, but these tools don’t adequately explain the complexity and variability of ALS.
ALS is classified as a rare disease. The lifetime risk of ALS is 1:300. It is difficult for physicians and researchers in one geographic area to connect with and study lots of people with ALS.
To understand ALS, we need to study it directly and effectively. CAPTURE ALS will do this.
By measuring many aspects of ALS, we will capture each individual’s unique ALS, bringing us another step closer to a world with precision medicine, with a treatment plan tailored to the individual.
Once captured, your data and biosamples which together tell your unique story, will be anonymously shared with doctors and researchers across Canada and the world to accelerate scientific advancements.
Help us understand human ALS by volunteering through CAPTURE ALS.
How does CAPTURE ALS work?
Who: CAPTURE ALS is looking for patients with ALS or related neurodegenerative disorders including ALS-Frontotemporal Dementia (ALS-FTD), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA) or asymptomatic individuals with a known ALS mutation who want their disease captured. We also need healthy individuals between the ages of 40-80 who as part of the study are willing to undergo an MRI brain scan.
What: Patient participants will visit the clinic four times over the course of a year. Healthy participants will visit the clinic two times over the year. Each participant will have the opportunity to have all aspects of their disease captured. Participants will be followed by a neurologist to examine the progression of their disease, will answer questions about their symptoms, undergo MRI scans, cognitive and speech testing, and have blood, and spinal fluid (optional) collected.
When: Recruitment is now OPEN!
Where: Initially, participants will be recruited in Edmonton, Toronto, Montreal, and Quebec City. Additional funding will enable the expansion of CAPTURE ALS to more sites.
What will happen to my samples and data?
All contributions to CAPTURE ALS will be de-identified. This means that your data and samples will not be linked to your personal information like name and birth date.
Biosamples, including blood and spinal fluid, will be sent to Montreal and stored in the Montreal Neurological Institute’s Biospecimen Imaging and Genetic (C-BIG) Repository.
Special cells called Peripheral Blood Mononuclear Cells (PBMC) will be removed from a portion of your blood sample. PBMCs can be used to produce your neurons and other cell types to model ALS in the laboratory.
We will decode your DNA which will help to understand the genetic causes of ALS, and determine if your disease is caused by a DNA mutation
Your samples will be analyzed for known and new biomarkers of ALS. Biomarkers, or biological markers, are measurable indicators of a biological state or disease. Biomarkers will improve how doctors make a diagnosis and test new treatments.
Data and remaining biosamples will be available for scientists around the world to analyze and add to your individualized data contribution.
Individual measures will be analyzed alone and together using modern machine learning techniques to identify unique subtypes of ALS that can better predict how a patient’s disease will progress and what treatment might work for them.
Open science and interoperability
CAPTURE ALS represents the Canadian contribution to a global effort on understanding ALS.
Through Open Science, researchers from across Canada and the world can register to access data and participant samples collected by CAPTURE ALS to help understand the causes of ALS, the variability that exists between patients, and to identify new treatments.
Researchers will be encouraged to share their experimental results with CAPTURE ALS.
CAPTURE ALS was built for maximum interoperability with other International ALS initiatives. This means that the data and sample collection is done in a way that optimizes sharing with other scientific groups, with the potential for pooling data and increasing impact.
Together we will understand and treat ALS much faster.
For those interested in knowing more about what data/samples will become available, please contact the program manager at firstname.lastname@example.org.