About Answer ALS
Answer ALS is the largest coordinated research effort to end ALS in the history of the disease. Its mission is to build a comprehensive clinical and biological assessment of ALS so that researchers and scientists across the globe are equipped to understand and ultimately end ALS.
We stand at a very important time and place in our mission to end ALS. Recent advances in biotechnology, stem cell biology and artificial intelligence (AI) have equipped us with the right tools and strategy to unravel the biological basis of the disease and bring clarity to potential therapeutic targets.
Answer ALS has united the nation’s experts in neurology, neuroscience and computational biology amongst other disciplines, to build a research program that is ready and able to push the boundaries of our current knowledge. Never before have we had the capability to study the clinical and biological characteristics of ALS at this level. With the help and participation of 1000 ALS patients and support from multiple philanthropists and partners, the Answer ALS team will build a library of information on the disease; a library that will be shared with the global research community. An estimated 20 trillion data points will be created, shared, analyzed and interpreted by the time the program concludes.
Today, we recognize that ALS is unlikely to be one disease and more likely to be a collection of subtypes. Each subtype may require a different approach for optimal treatment, a concept known as personalized medicine. In collaboration with AI experts, the extensive body of knowledge created by the program will be mined to uncover ALS subtypes. And by uncovering the clinical and biological complexities of the disease, the program will lay the foundation for the development of effective, personalized medicine for ALS.
How will this be achieved?
- Generate stem cells to replicate patients’ own motor neurons
- Perform cutting edge, advanced biological analyses (“multi-omics”) to understand how/why ALS motor neurons fail and die
- Comprehensively assess patients in the clinic and at home through the use of a custom designed app
- Apply AI and “big data” analyses to identify disease variation patterns
- Develop treatments based on unique pathways identified
What has been accomplished?
- Over 875 participants enrolled in the study – quickly approaching the goal of 1000!
- 100 Control Participants
- 8 clinical sites actively participating
- Over 40,000 longitudinal biosamples already amassed and growing – shareable to researchers around the world
- 375 genomes completed sequencing with nearly 200 more in progress.
- Launch of Answer ALS iphone app to measure fine motor skills, breathing and speech