The ALS Therapy Development Institute (ALS TDI) is pleased to announce a significant development in our pursuit of ALS insights. We have received a substantial grant from the Centers for Disease Control and Prevention (CDC), $480,000 annually for up to three years, to initiate a comprehensive research project dedicated to identifying the lifestyle risk factors associated with ALS. 

Focus and Scope of the Project

This research initiative marks a pivotal moment – an unprecedented systematic examination of the risk factors associated with ALS. Distinct from previous investigations primarily focused on genetics, this project is set to explore a range of variables beyond genetics that may contribute to the development of ALS.

To perform this detailed analysis, researchers at ALS TDI will collaborate with Dr. Danielle Boyce, a data scientist and researcher with extensive background in ALS research and knowledge of biomedical informatics, and Pat Dolan, a person living with ALS who has expertise in geographic information software and mapping.

Data Sources and Approach

Central to this exploration is the meticulous analysis of data contributed by over 800 individuals with ALS, collected through ALS TDI’s ALS Research Collaborative (ARC) study. The project will study ARC’s qualitative survey data—capturing historical and lifestyle factors—alongside various forms of quantitative clinical data, derived from voice recordings, movement data, and longitudinal blood samples.

By overlaying these data, we can potentially uncover relationships involving factors like head and neck injuries, environment, military service, and more.

ALS TDI's CEO and Chief Scientific Officer and Principal Investigator of the study, Fernando Vieira, M.D., says: "Through the ARC study, we've gathered years of crucial data on individual histories and lifestyles before ALS diagnosis. This new funding will provide us with additional resources to organize and structure these data in meaningful ways, deepening our understanding of potential lifestyle risk factors associated with ALS. This would not be possible without the data that is being generously contributed by hundreds of people with ALS through ARC."

Uncovering Actionable Insights

By identifying potential causes and contributing factors of ALS onset, this research has the potential to pave the way for more effective treatments, individualized interventions, and a deeper comprehension of ALS:

  1. Early Detection and Diagnosis: Unveiling potential risk factors could aid early identification and management, boosting timely interventions.
  2. Tailored Treatments: Understanding underlying causes opens pathways for precise, effective treatments tailored to patient subgroups.
  3. Preventive Strategies: Identifying specific risks may facilitate preventive approaches, potentially reducing the incidence of ALS.

You are the Driving Force

Your role is vital in this initiative. By actively participating in the ALS Research Collaborative (ARC) study, you're providing critical data. Your involvement propels our research, moving us closer to impactful outcomes for our ALS community.

Together, we are forging a path that brings us closer to understanding and ending ALS.