CAPTURE ALS: the comprehensive analysis platform to understand, remedy and eliminate ALS

Abstract

The absence of disease modifying treatments for amyotrophic lateral sclerosis (ALS) is in large part a consequence of its complexity and heterogeneity. Deep clinical and biological phenotyping of people living with ALS would assist in the development of effective treatments and target specific biomarkers to monitor disease progression and inform on treatment efficacy. The objective of this paper is to present the Comprehensive Analysis Platform To Understand Remedy and Eliminate ALS (CAPTURE ALS), an open and translational platform for the scientific community currently in development. CAPTURE ALS is a Canadian-based platform designed to include participants’ voices in its development and through execution. Standardized methods will be used to longitudinally characterize ALS patients and healthy controls through deep clinical phenotyping, neuroimaging, neurocognitive and speech assessments, genotyping and multisource biospecimen collection. This effort plugs into complementary Canadian and international initiatives to share common resources. Here, we describe in detail the infrastructure, operating procedures, and long-term vision of CAPTURE ALS to facilitate and accelerate translational ALS research in Canada and beyond.

Keywords:

• CAPTURE
• biomarkers
• CALSNIC
• platform
• open science

Author contributions

VPM wrote the manuscript and prepared the figures. CM is the CAPTURE ALS program manager and assisted with writing the manuscript. SK, ND, AG, JR, CVV and DT are members of the CAPTURE ALS executive committee and reviewed the manuscript in detail. SK, YY, CVV, ER, AE, RG, TB, JR WJ, AG, ND, KJ, LZ, YIM are members of the scientific committee. SK, AD, AG, ND and LZ are site principal investigators. HK reviewed the manuscript in detail. MB is a project manager at a CAPTURE ALS site. SD is the Project Manager and Software Developer at LORIS. JK is scientific director of C-BIG. All authors have read and approved the manuscript.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This Project has been made possible with the financial support of Health Canada, through the Canada Brain Research Fund, an innovative partnership between the Government of Canada (through Health Canada) and Brain Canada, and of ALS Canada, Alnylam Pharmaceuticals and Regeneron. The views expressed herein do not necessarily represent the views of the Minister of Health or the Government of Canada.