The ARC Study: A Driving Force in ALS Research

The ALS Research Collaborative (ARC) Study is the longest-running natural history study of ALS. Since 2014, researchers at the ALS Therapy Development Institute (ALS TDI) have partnered with people with ALS worldwide to collect a wealth of data about the disease. These data include comprehensive lifestyle and genetic data from people with ALS, a repository of biological samples, and more.

The ARC study drives research at ALS TDI and beyond, helping us learn more about the disease, develop better measures for diagnosis and tracking progression, and accelerate the discovery of treatments. This has been made possible by the generous participation of thousands of people living with ALS and asymptomatic carriers of ALS-related genetic mutations over the past decade, including hundreds of participants who continue to contribute data every month. All participation is remote and can be completed from anywhere in the world.

ARC Data by the Numbers (As of April, 2025)

Participant Engagement:1,703 individuals have enrolled in the study, representing a global reach across 50 countries and 49 states (If you’re living with ALS or an asymptomatic carrier of an ALS-related mutation in Wyoming, you could help us make it all 50 states! Please consider signing up for the ARC study here.)
Massive Data Generation:An astounding 8.5 trillion data points have been collected, forming a powerful resource for analysis.
Fueling Research:ARC data is currently being utilized in 50 ongoing studies and has already contributed to 6 published research papers.
Innovation in Biomarkers:This rich dataset has directly led to the development of five prototype digital biomarkers for ALS using accelerometer and digital voice recordings.
Asymptomatic Carriers: 65 asymptomatic carriers of ALS-related genetic mutations have enrolled in the study, with the potential to provide new insights into how ALS manifests and why it might affect one individual differently than another.
Global Collaboration:110 research groups have requested and gained access to the ARC Data Commons, demonstrating its value to the wider scientific community.

The Types of Data Collected by ARC

Personal Background Information
- Surveys on topics such as family history, geography, lifestyle, medical history, occupation, and ALS experience.
Blood Samples
- Some ARC participants in the US and Canada contribute blood samples from home through monthly visits by an in-home phlebotomist.
Speech Tracking
- Voice recordings made monthly over the phone provide insights into changes in speech over time.
Movement Tracking
- Accelerometer devices measure movement and provide recordings of changes in ability over time.
Electronic Health Records
- ARC participants may optionally integrate their Electronic Health Records (EHRs) into the ARC study. An EHR is an electronic version of a patient's history and care that is maintained by their medical provider over time.
ALSFRS-r Tracking
- Monthly ALSFRS-r surveys help participants track their progression and provide a crucial point of comparison for other data collected through the study.
Whole Genome Sequencing
- Certain ARC participants may be asked to submit samples for whole genome sequencing.

How ARC Data is Advancing ALS Research

Unlocking insights into ALS risk factors to inform prevention and early detection.
- In 2023, ARC researchers and outside collaborators launched a robust study, using ARC data such as surveys and electronic health records, to identify potential lifestyle risk factors for developing ALS.
- By welcoming participants who are asymptomatic carriers of ALS-related genetic mutations into the ARC study, ARC researchers will be able to gain new insights into what contributes to ALS onset, identify potential diagnostic biomarkers, and better understand genetic—and possibly other forms—of ALS.
Developing new, more accurate biomarkers of disease progression to improve clinical trials and medical care.
- In 2022, ALS TDI received a $281,000 grant from the Department of Defense to conduct an unprecedented proteomics study in blood samples provided by ARC participants to find potential blood-based biomarkers for ALS.
- In 2024, ALS TDI announced a partnership with LifeARC to further analyze these proteomics data and bring any new potential biomarkers to the clinic.
- In 2025, ALS TDI contributed these proteomics data to the Global Neurodegeneration Proteomics Consortium (GNPC), a repository of proteomics data representing multiple neurodegenerative conditions.
- ARC researchers have developed five novel digital biomarkers for tracking ALS progression using voice recordings and accelerometer data, in collaboration with researchers from Google, Harvard, and Massachusetts General Hospital.
Pinpointing new drug targets to develop more effective treatments.
- In 2020, ALS TDI researchers announced the discovery of a new drug target for C9orf72-related ALS, Type I PRMT Inhibitors—a discovery made possible in part by biological samples contributed by ARC participants.
Characterizing ALS patient subsets for the creation of targeted therapies.
- ARC researchers are undertaking large-scale studies of omics data collected through the study to better understand subsets of people living with ALS, as well as identifying potential drug targets, risk factors, and biomarkers.
Sharing Data with the Global Research Community
- All data collected by the ARC study are made available to the wider ALS research community through the ARC Data Commons. This online portal allows researchers at biotech companies, academic institutions, and nonprofits to access all data collected by ARC.
- In 2024, ALS TDI announced a collaboration with Answer ALS and Microsoft to incorporate ARC data into Answer ALS’ Neuromine data platform, bringing together two of the largest clinical and omics datasets in ALS.

If you’re living with ALS or are an asymptomatic carrier of an ALS-related genetic mutation, your data could be crucial to the next major innovation in ALS research. To learn more and sign up to participate, visit https://arc.als.net/.