FAQ

Why study these specific groups?

Sporadic ALS is challenging to study because its causes are not well understood and may differ from person to person. By focusing on populations with a higher-than-average incidence of ALS, researchers can investigate whether certain biological traits contribute to this increased risk.

Research has shown that elite athletes and military service members face about a 25% higher incidence of ALS. Pinpointing genetic and molecular clues in this clear-risk group could reveal new pathways toward treatments that benefit everyone living with ALS.

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What are examples of traits that are unique to this group?

One example is a genetic variant called ACSL1, which helps muscles use fat for energy more efficiently—an advantage for endurance. However, when paired with years of intense physical demands, it may also place added stress on cells and potentially contribute to nerve damage. Understanding these links could reveal new insights into ALS that benefit all those affected.

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Who might qualify for this study?

We are seeking individuals diagnosed with ALS who have maintained high levels of physical performance or training for many years, such as:

• Endurance athletes (e.g., long-distance runners, cyclists, triathletes)

• Professional or collegiate team sport athletes (e.g., soccer, football, hockey, basketball, rugby, track)

• Military service members in physically demanding roles

• Firefighters and other first responders

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How is eligibility determined?

Champion Insights utilizes a comprehensive screening questionnaire, based on decades of published research and validated assessment tools. Questions cover athletic history, medical background, and lifestyle factors to determine whether someone qualifies as “high performing.”

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How is Champion Insights different from the ARC Study?

The ARC Study is the longest-running natural history study in ALS and is open to anyone diagnosed with ALS or who is an asymptomatic gene carrier. Like the ARC Study, Champion Insights will collect a broad range of genetic, clinical, and molecular (“omics”) data to advance our overall understanding of ALS. However, Champion Insights is not a duplication of ARC’s work; it is specifically designed to gather detailed information relevant to these higher-risk groups, such as comprehensive histories of physical training, competition, and occupational exposures.

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If I participated in the ARC Study and qualify for Champion Insights, can my existing data be used?

Yes, once qualified for Champion Insights, your existing data can be used in both programs.

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What data will be collected?

Champion Insights gathers a broad set of genetic, clinical, and molecular (“omics”) data, along with detailed history specific to this population, such as training, competition, and occupational demands.
Data collection methods may include:

• In-home blood draws

• Movement tracking with wearable devices

• Lifestyle surveys

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What sets this apart from other ALS studies?

No previous study has collected such a deep and integrated set of data on this specific high-risk population. This unique cohort combines multi-omics analysis, patient-derived motor neurons, continuous wearable monitoring, and open data access.. Backed by partners like ALS TDI, Augie’s Quest, Answer ALS, Neuromine, Gates Ventures, and GATC Health, the study brings together unmatched expertise, global resources, and independent oversight.

 

How could this data be relevant for people with ALS outside of this subgroup?

Mechanisms uncovered in these groups could replicate in broader ALS cases. Lessons on lipid metabolism, oxidative stress, and neuro‑inflammation may guide future trials for everyone.

 

How soon could findings help people living with ALS?

Biomarker and therapeutic target discovery and prioritization will begin immediately, and early findings may be available within the first year. Data will be available to qualified external research teams following data generation and quality control in similar timeframes.