In March 2023, the ALS Therapy Development Institute (ALS TDI) launched the ALS Research Collaborative (ARC) – an ambitious global initiative developed to better understand the underlying biology of ALS, and to accelerate the discovery of treatments. ARC collects natural history and biological data from people with ALS, which is then made accessible to researchers worldwide through the ARC Data Commons, an innovative data-sharing platform powered by Google Cloud and Google’s Looker application.

This represents an important leap forward for the ALS research community – a globally shared data source, and a tool to quickly ask questions of those data that could have previously taken months or even years of study. However, ARC is not only a resource to ALS scientists and researchers – the program also has the potential to be impactful for people with ALS today.

I’m grateful to be part of the ALS Research Collaborative and am particularly excited about the launch of the ARC Data Commons,” says Sandra Mikush, a current ARC participant who is living with ALS. “My participation is easy and convenient, and my clinical team has access to important data about my health between clinic visits. I’m especially glad that my data can be shared widely, yet privately, to advance ALS research. We need more data, more access, and more research to find new biomarkers and treatments to win the battle against ALS.”

Contribute to ALS Research – and Access Your Data

ARC is an evolution of ALS TDI’s long-running natural history study, formerly known as the Precision Medicine Program (PMP), which began in 2014. Through this program, ALS TDI has partnered with people with ALS all over the world to collect data about movement, lifestyle, medical history, genetics, biomarkers, voice recordings, and patient cell biology. All these data collection efforts will continue uninterrupted as part of ARC. More than 850 people have provided data to this study so far, and that number will only continue to grow as we continue to enroll new participants.

Every aspect of participation in the ARC study can be accomplished from one’s home. All questionnaires and surveys are available online, voice recordings are obtained over the phone, and movement data is collected with wearable accelerometers that are sent through the mail. Even blood sampling can be done remotely in many instances, with mobile phlebotomists visiting participants’ homes to collect samples.

Every ARC participant – including people with ALS diagnoses and presymptomatic carriers of ALS-related gene mutations – can view the data they’ve contributed through a convenient online dashboard. This dashboard provides tools for tracking progression – from charts displaying ALSFRS-r scores over time to AI-powered tools for measuring the impairment of one’s speech. These data can be shared with one’s medical team to help make decisions about their care.

A Simple Way to Make a Global Impact

There are many important studies that people with ALS can participate in to support research about the disease – from clinical trials testing potential treatments to observational studies designed to learn about ALS. However, ARC is unique among these, as the data contributed by participants can be used by researchers around the globe who are investigating ALS from many angles.

While data collected through the ARC study will of course support the essential research at ALS TDI to discover effective treatments for ALS, it will also be available to researchers across the ALS space through the ARC Data Commons. This means that all ARC participants’ data has the potential to power research at institutions all over the world – from pharmaceutical companies to academic institutions to other non-profit research groups.  

Help Aid Discovery of New Biomarkers and  Make Clinical Trials More Efficient

Data contributed through ARC have the potential to influence and inform each step of the drug discovery and development process.

The insights gained through ARC data about the biology and potential causes of ALS could help scientists develop more specific subtypes of the disease. ALS is an extremely diverse condition – no two cases are exactly the same. While the average lifespan after the first symptoms of ALS is 3-5 years, some people progress much faster, while others may live for decades with the disease. Some people’s symptoms start in their arms or legs, while others experience bulbar onset, affecting the face and head. There have even been extremely rare cases in which people diagnosed with ALS have experienced a partial reversal in their progression, regaining some of their lost abilities.

With the data provided by the ARC Study and powerful analysis tools included in the ARC Data Commons, researchers will be able to investigate the genetic and environmental factors that could be behind these differences. With this knowledge, researchers could better identify what specific populations a particular treatment has more potential to help, giving people who enroll in those trials a better chance of seeing a benefit. They may also be able to identify new drug targets by looking into the potential causes of slower progression and reversals.

Additionally, searching for reliable biomarkers that can provide objective measures of ALS progression is one of ARC’s primary goals. ARC’s in-home blood collection program supports the search for biomarkers that could diagnose ALS or monitor progression through a blood test. In early 2022 ALS TDI received a grant from the Department of Defense to analyze samples obtained through this study for protein biomarkers. In addition to these biological lines of inquiry, we have also collaborated with Google researchers to create digital a biomarker that can track disease progression through voice recordings.

Armed with good biomarkers, clinicians and researchers may be able to diagnose ALS sooner, track progression more accurately, and observe responses to treatments in clinical trials with more sensitivity.

Your data could be the key to unlocking the next breakthrough in ALS research. Join ARC today and help us move global ALS research forward:

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.