“The ALS Research Collaborative (ARC) study was already unique in its duration and the depth of the data that our participants have been contributing. These next steps for ARC represent a force multiplier in our global effort to better understand, combat, and end ALS.” – Fernando Vieira, M.D. CEO and Chief Scientific Officer at ALS TDI

The ALS Therapy Development Institute (ALS TDI) is pleased to announce the exciting expansion of the ALS Research Collaborative (ARC)! 

Thanks to the recent approval from the Institutional Review Board (IRB), ARC will be implementing several enhancements which will allow us to grow our data collection efforts and ultimately advance our understanding of ALS.

The expansion of ARC includes three pivotal changes, each of which plays a crucial role in advancing ALS research:

  1. Doubling the Size of the ARC Study: We will double the ARC study – increasing it from 1000 to 2000 participants. This expansion is of paramount importance, as it enables us to gather data from a larger and more diverse population. ALS is a complex disease with substantial heterogeneity, and by incorporating data from a broader spectrum of individuals, we can learn significantly more about patent subsets.
  2. Integration of Electronic Health Records (EHRs): We are now able to integrate Electronic Health Records into our data collection efforts. EHRs contain a wealth of detailed information on patient history and care. By harnessing this resource, we can gain profound insights into the development and progression of ALS.
  3. Tailored Inclusion of Asymptomatic ALS-Related Gene Carriers: This focused inclusion of asymptomatic carriers of ALS mutations has the potential to provide us with new insights into processes that delay or accelerate ALS disease onset. It also has the potential to aid in the identification and optimization of diagnostic biomarkers of ALS.

ARC has already collected comprehensive data from nearly 1000 individuals living with ALS, incorporating self-reported surveys, digital measures like voice recordings and accelerometers, and blood samples. This expansion will enable us to gain and share, through the ARC Data Commons, invaluable insights into ALS causes, progression, and diverse patient subsets.

If you are a person with ALS or an asymptomatic gene carrier, you can help to advance global research by enrolling in the ARC study today. Enroll here.

We want to thank our amazing community, including all of our current and previous study participants, for helping us continue to grow the ALS Research Collaborative and accelerate research to end ALS.

What Do I Do Next?
  • Watch the ARC Town Hall to learn more and see a demo of the ARC Data Commons. Watch the recording here.
  • Learn more about the ARC study and enroll here.
  • Read the ARC announcement here.

Do you have questions about ARC? We have a team that's here to help you! Email us to get connected with a member of our team. Message us at info@als.net.