The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with
The End ALS Challenge, administered by Kaggle, an online community of data scientists and machine learners, presents 150 rich datasets contributed from 1,000 Answer ALS patient research participants, which were collected through eight clinics and dozens of participating partners. Answer ALS is the largest and most comprehensive ALS research project in history, producing more combined ALS clinical and biological data than has ever been amassed, while openly sharing with the global research community.
The Challenge asks participants to model solutions to key research questions that were developed by neurologists, researchers, and patient communities. An interdisciplinary global expert panel will review the solutions, and participants could have the opportunity to join multi-stakeholder roundtables to share their work and potentially identify further solutions. The outputs created by the scientific community will be shared with the patient community through an open and continuous feedback loop to help translate rare disease research into positive disease-modifying outcomes for patients faster.
“We believe that sharing knowledge and multi-disciplinary expertise through open science can improve public and private collaboration, and contribute to a learning health system that better informs patient care,” says Fanny Sie, Strategic Healthcare Partner, AI and Digital Health, Roche Canada. “As the first project launched through the AI CoE, the End ALS Challenge will facilitate data access for all stakeholders to generate meaningful data-driven insights and accelerate improvements for patients with a neurodegenerative disease through innovative AI and machine learning techniques.”
Indu Navar, CEO of EverythingALS and Answer ALS Advisory Board Collaborator, says, "As a patient-oriented organization, we at EverythingALS have experienced caring for our loved ones with ALS first-hand and know why it's critical we end the disease. Our mission is to discover and deploy initiatives that focus on new ways to diagnose and treat neurological disorders at the intersection of computation and brain science with a focus on ALS. We are excited to partner with the Roche Canada AI Centre of Excellence and want to encourage other partners to join this challenge for improving breakthroughs in ALS and brain science."
ALS is one of more than 7,000 identified rare diseases and approximately 225,000 people live with the progressive and debilitating disease across the globe, with an expected increase of 69 per cent by 2040. In Canada, there are about 2,500 - 3,000 adults who live with the disease.
Managing ALS comes with a number of challenges and places a significant burden on individuals living with the disease, their families, and society as a whole. Similar to other rare diseases, ALS is also difficult to diagnose and treat due to differences in its symptoms, rate of progression, and severity. Real world data, such as the AnswerALS data sets, has the potential to shed light on these challenges to better understand disease mechanisms, identify gaps in diagnosis and treatment for improved disease management, and potentially help uncover life-changing medicines.
“Enlisting data scientists and machine learning experts to gain new insights into ALS is a critical and exciting step towards gaining a better understanding of the disease,” said Dr. David Taylor, VP Research at the ALS Society of Canada. “Using the End ALS Challenge to bring new ideas and perspectives to the field will most certainly enhance the tremendous work being done through Answer ALS.”
“By bringing together a community of data scientists, researchers and people with lived experience, we can better understand ALS and find effective treatment options faster,” said Tom Mikkelsen, President and Scientific Director, OBI. “As an organization built on a foundation of collaboration and data sharing, we are excited about this partnership to generate actionable knowledge about ALS.”
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