Diagnosed with ALS on Christmas Eve 2018, at the age of 29, Deane Gorsline, an Engineer Officer in the Canadian military, is supporting the CAPTURE ALS initiative with his ALS Burpee Challenge.
In Deane’s words: "Pattern recognition is essential to success on any battlefield and the fight against ALS is no different. Part of the issue for the to identify effective therapies is the heterogeneous nature of ALS. CAPTURE ALS aims to fill a glaring deficiency in our fight against this disease by way of data collection and analysis to help answer our many questions about the disease and provide focus to therapy development."
Despite Federal promises to fund ALS research (Motion-105: https://www.ourcommons.ca/members/en/judy-a-sgro(1787)/motions/8659380), ALS Canada's request for support for the $35 Million investment it will take over a seven year period, for CAPTURE ALS, has been repeatedly ignored.
Objective: The Comprehensive Analysis Platform To Understand, Remedy and Eliminate Amyotrophic Lateral Sclerosis (CAPTURE ALS) is an innovative initiative that will pool resources and talent in Canada to advance our understanding of the biological basis of ALS and address its heterogeneity.
Background: ALS drug discovery has been hampered by its complexity, clinical heterogeneity and rare disease status. Key advances will only be possible through multisite, multidisciplinary collaborations and the sharing of large amounts of data. CAPTURE ALS will leverage and expand the existing clinical network and infrastructure developed by the Canadian ALS NeuroImaging Consortium (CALSNIC) to provide the most comprehensive picture of a person living with ALS. Led by a group of basic and clinician scientists, it will be driven academically through four existing ALS centres of excellence in Edmonton, Toronto, Montreal, and Quebec.
Design/Methods: CAPTURE ALS will provide the infrastructure and tools to enable the collection, storage, analysis and dissemination of standardized, longitudinal, multi-dimensional data and biosamples from ALS patients, related disorders, and healthy controls across Canada. Participants will be followed prospectively to longitudinally collect detailed clinical, neurocognitive, speech, electrophysiological and imaging data. Biospecimens, including serum, plasma, peripheral blood mononuclear cells (PBMCs), cerebrospinal fluid (CSF), and urine will be collected at the same intervals, with postmortem material collected when possible.
Results: The rich datasets and samples collected through this platform will be used to develop and validate novel ALS biomarkers and enable the multidimensional stratification of ALS patients based on clinical phenotype, and imaging, genetic and cellular characteristics. Operating through Open Science principles, data and samples will be made rapidly available to investigators and industry partners.
Conclusions: CAPTURE ALS will contribute to global efforts to expedite ALS research, and provide hypothesis and data driven insights into disease mechanisms and clinical heterogeneity.