While researchers know relatively little about the causes behind sporadic ALS, there is evidence that some groups of people may be at increased risk of the disease. The biological mechanisms that could cause one group to be more at risk than another, however, remain a mystery. 

To learn more about the genetic, environmental, and lifestyle risk factors that could contribute to ALS risk, the ALS Therapy Development Institute (ALS TDI), Augie’s Quest to Cure ALS, and Answer ALS announced the Champion Insights Study in August 2025.

This Champion Insights study aims to recruit people from three groups that, collectively, may experience the disease at a roughly 25% higher rate than the general population:

  • Veterans of the Armed Forces, including the Army, Coast Guard, Navy, Air Force, and National Guard.
  • Elite athletes, including people who played collegiate and professional sports, as well as those who have completed marathons, triathlons, or ultramarathons.
  • First responders, such as police officers, firefighters, and EMTs.

The research for Champion Insights program will be led by ALS TDI. It will function as a separate but complementary study to ALS TDI’s ALS Research Collaborative (ARC), the longest-running natural history study in ALS. Through ARC, people with ALS contribute comprehensive data, including electronic health records, ALSFRS-r scores, voice recordings, accelerometer data, and blood samples. Anyone with ALS or asymptomatic carriers of ALS-related genetic mutations is eligible to enroll.

Champion Insights participants will contribute all the same data as ARC enrollees, as well as a series of surveys and biological tests unique to the study. This will provide researchers with an opportunity to investigate what could set these specific groups apart from the general population of people with ALS. 

“The goal of Champion Insights is to understand the environmental risk and underlying biology of groups who are at higher risk of developing ALS,” says Dr. Fernando Vieira, ALS TDI’s CEO and Chief Scientific Officer. “If we can understand what drives the higher risk in these individuals, we can potentially learn more about the biology that drives the disease.”

Examining Lifestyle Intensity as an ALS Risk Factor

As a starting point, Champion Insights will examine a common attribute shared by all three of these groups. Veterans, first responders, and athletes have all chosen to pursue careers or hobbies that often involve a certain level of “intensity” — a quantity that is difficult to define and measure. One way to potentially quantify this “intensity” is by looking at it through the lens of stress, both in the sense of mental stress and the stress on the body caused by high-level physical activity. To measure this lifestyle stress, study participants will be asked to complete a series of three surveys that examine their tendency toward extreme exercise, work addiction, and thrill-seeking behavior.

The longest and most in-depth of these surveys is a specially modified version of a questionnaire developed by exercise scientists to assess a person’s lifetime level of exercise. It asks participants to create a diary-style log of the physical activities they have participated in throughout their lives, recreationally and as part of their job.

“As an example, someone might say that they played badminton 10 hours a week,10 months a year, for 15 years of their life,” says Alan Premasiri, ALS TDI’s Director of Clinical Operations. “That activity is assigned a certain energy value. Everything is weighted — badminton would be less than sprinting, which would be less than running an ultramarathon. By totaling all these values, we can score somebody’s overall lifetime physical activity.”

Similarly, the work addiction and thrill-seeking behavior surveys will allow Champion Insights researchers to quantify participants’ tendencies to find themselves in situations involving high mental stress. With these three scores, the study will seek to develop a picture of the behaviors that could set these groups apart from the general population. 

“We may find compounded risks that can be explored further,” says Dr. Vieira. “It could end up being multiple kinds of behaviors — something like extreme levels of exercise plus a tendency toward work addiction or thrill-seeking — that could increase your risk of developing ALS. Collecting data about populations with those tendencies might teach us something about their biology, because many of those activities likely induce stress hormones and generally put a lot of stress on the body.”

Connecting Lifestyle and Biology

To investigate the connection between biology and behavior, participants will also be asked to submit blood samples for whole-genome sequencing and metabolic testing. Metabolic testing looks at the levels of certain metabolites — molecules made when the body breaks down food, chemicals, drugs, or its own tissue. Understanding metabolic differences between these groups could provide hints as to the downstream biological effects of the behaviors measured in the study’s survey portion.

“We’ll be looking at various metabolites that would be linked with high physical activity or high stress,” says Premasiri. “For example, certain metabolites could be associated with high-energy physical outputs. This could tell us whether someone’s biological baseline profile looks different because they have had such intense physical activity in their life. Then, we can investigate if the presence of these metabolites correlates at all with their ALS.”

Whole genome sequencing will provide insights into the possible genetic differences that could account for these groups’ higher risk. In ALS, we often talk about genetics in terms of the inherited mutations that cause the disease in cases of familial ALS. However, many more genetic risk factors could make someone more likely to get ALS under certain circumstances. 

“An important question this study will ask is, ‘Are there variants of certain genes that make you a strong athlete or make you more comfortable going through the rigors of military training?’” says Dr. Vieira. “Do they also increase your risk of ALS? Is it the activity itself, or is it the genetic predisposition? We do know that things like intense physical activity can change a person’s metabolism — the way they consume energy and the metabolites they produce. I think we may learn a lot by comparing blood samples from this subset of people with ALS to subsets that are not in these risk populations.”

Champion Insights and the ARC Study

Champion Insights will compare the data collected from veterans, athletes, and first responders with the much wider population enrolled in the ARC Study. If these comparisons reveal risk factors that could be found in other groups, the study will then enter a second phase in which more people with ALS are invited to participate.

“Our goal is to find what attributes in this first cohort of people seem to have the stronger relationship to ALS,” says Dr. Vieira. “Let’s say we find a genetic marker associated with exercise and ALS. We may go into the ARC study and look for people who also have that genetic marker but have never run a marathon or played college sports. Maybe they were a junior varsity athlete in high school. But they will get invited to participate if that ends up being the feature we're focusing on in phase two of the study.”

In addition to providing historical control data, the ARC Study will also be utilized to find potential enrollees and provide further opportunities to contribute to research for Champion Insights participants. Current ARC participants who are veterans, elite athletes, and first responders will be invited to pause their enrollment in ARC and join Champion Insights. After completing the two-year course of Champion Insights, participants will have the opportunity to continue contributing data through ARC, which allows indefinite participation. 

The Potential of ALS Risk Factor Research

The Champion Insights study represents an exciting opportunity to learn more about why veterans, first responders, and athletes get ALS more than the general population. However, the study has the potential to teach us about the biological processes that drive the disease more generally. Discovering any concrete risk factors could open new avenues of research into the steps that occur along the way to triggering the disease — the biological “dominoes” that must tip for someone to develop ALS.

“Some of those dominoes might represent therapeutic intervention points,” says Dr. Vieira. “That might point the way to finding therapeutics that are well-tailored to these subpopulations. It might mean that these subpopulations give us clues about therapeutics that could be generally tailored to everybody with ALS. We won’t know until we see the data, but the potential is there.”

Enrollment for the Champion Insights Study is currently open. For more information, click here.

If you want to participate in research and you are not a veteran, elite athlete, or first responder, everyone with ALS and asymptomatic carriers can enroll in the ALS Research Collaborative (ARC) Study. Learn more about how you can start contributing to the ARC Study here.

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