One Year of the ALS Research Collaborative (ARC)

In March of 2023, the ALS Therapy Development Institute (ALS TDI) launched an ambitious global initiative developed to better understand the underlying biology of ALS and significantly accelerate the discovery of treatments – the ALS Research Collaborative (ARC).

Through the ARC Study, ALS TDI partners with people with ALS all over the world to collect data about the disease. These data inform research at ALS TDI and are shared with the entire ALS research community through the ARC Data Commons.

One year since its debut, the ARC team at ALS TDI has marked several accomplishments and milestones, including collecting large amounts of data, launching ambitious research projects, and fostering new collaborations.

ARC by the Numbers

The bedrock of ARC’s mission is the collection of comprehensive ALS data. ARC study participants are able to contribute biological samples, digital recordings of their speech and movements, electronic health records, ALSFRS-r scores, and more. In 2023, ARC participants from 43 states and 21 countries have contributed:

• 2534 ALSFRS-R scores
• 1887 voice recordings
• 499 accelerometer sessions
• 230 Blood draws

These data support critical research goals at ALS TDI including:

• The development of new digital biomarkers for tracking disease progression using voice and accelerometer movement recordings.
• Research into potential blood-based biomarkers for ALS.
• The search for potential lifestyle-related risk factors for ALS.
• Our ongoing drug discovery efforts to find treatments for everyone with ALS.

Launching the ARC Data Commons

In addition to informing research at ALS TDI, these data 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 addition to the data that is continuously added through the ARC study, the database includes all data collected since 2014 by the program’s predecessor at ALS TDI, the Precision Medicine Program (PMP). It also provides advanced tools to search and analyze these data, powered by Google’s Looker application. Since the launch of the ARC Data Commons, nearly 100 institutions have reached out to ALS TDI to inquire about signing up for access to the portal.

Expansion and Integration of Asymptomatic Carriers

The ARC Study, including its previous iteration as the PMP, is the longest running natural history study in ALS. Since 2014, over 900 people have contributed data to the study. In 2023, ARC received approval from its institutional review board (IRB) to more than double this number to 2000 participants over the coming years.

Additionally, the IRB approved plans to allow asymptomatic carriers of ALS-related genetic mutations to enroll in the study for the first time. Including these participants presents many opportunities to explore new frontiers in ALS research, including:

• The environmental, and lifestyle factors that might accelerate or delay ALS onset.
• The biological changes that occur during ALS onset and progression – potentially revealing new biomarkers.
• How other genes beyond the known ALS-related mutations might influence ALS onset.

New and Continuing Partnerships

In 2023, the ARC team at ALS TDI worked with several outside collaborators to advance new research projects and improve the study’s data collection efforts. These collaborations  include:

• Working with Unite Genomics, a leading healthcare data analytics company, to allow ARC participants to submit their electronic health records (EHRs). These data have the potential to advance ALS research both at ALS TDI and throughout the ALS space by leveraging the power of participants' complete medical histories. 
• Continuing our efforts to develop new digital biomarkers for ALS using ARC data and machine learning. In August, researchers from Massachusetts General Hospital and the ARC team published a collaborative paper outlining how accelerometer data can be used to sensitively and accurately track ALS progression.
• Analyzing data to find new ALS risk factors. Also in August, ALS TDI received a $480,000 annual grant for up to three years form the Center for Disease Control and Prevention (CDC) to analyze ARC data in search of potential lifestyle risk factors for ALS. Working with the ARC team on this project will be Dr. Danielle Boyce, a Tufts University data scientist and researcher, and Pat Dolan, a person living with ALS with expertise in geographic information software and mapping.

The Future of ARC

While the ARC program has reached several significant milestones in its first year, there is still much work to be done.

“The launch of ARC last year was just the beginning of the changes that are coming to the program,” says Alan Premasiri, ARC’s Manager of Clinical Operations. “We want to improve the whole user experience, expand on the data we collect, and capture new data. We've been getting feedback from the patient and research community about ways we can achieve these changes, and we're hoping to implement many of them in the coming year. The launch of ARC and its collaborative nature has really invited more discussion on how we can keep improving.”

To learn more about ARC and sign up to participate, click here.

What to do Next:

• Sign up to participate in the ALS Research Collaborative
• Learn more and request access to the ARC Data Commons
• Donate to help support the ARC science team. View their wish list here.