August marks a month-long opportunity to raise awareness and move closer to a world without ALS. Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every piece of legislation passed, and every story shared – it all adds up!
We recently announced that we’re providing new funding to allow GNS Healthcare to use artificial intelligence (AI) to create a comprehensive disease model to advance research into ALS. GNS Healthcare will use its powerful machine learning platform, called REFS, in conjunction with the rich Answer ALS patient datasets, which are accessible to clinicians and scientists throughout the ALS research community. The project will be led by Dr. Iya Khalil, chief commercial officer and co-founder of GNS Healthcare.
Answer ALS, under the leadership of Dr. Jeffrey Rothstein, executive director for the Answer ALS Research Program, is collecting data from 1,000 people with ALS to build a comprehensive picture of the disease that includes clinical, genetic, molecular, and biochemical information that is openly shared with the global ALS research community. Together, this information will yield thousands of petabytes of new ALS-specific information that requires analysis.
Our partnership with GNS Healthcare will transform these petabytes of patient data into mechanistic models, connecting genetic, molecular, and biochemical variables to clinical outcomes that will allow in silico experiments to be performed at a rapid rate on the computer.
These rapid, high-throughput computational experiments will explore the numerous factors in the REFS Answer ALS data models that drive disease progression and drug response. Discoveries will then be evaluated and validated with wet lab experiments and, eventually, clinical studies.
Building the powerful, causal machine learning model of ALS disease and developing an easy-to-use, cloud-based, interface will be carried out in two phases. During the first phase, GNS Healthcare will work with Answer ALS to receive and integrate patient clinical data with corresponding motor neuron data to build and strengthen the model structure.
Researchers will then be given an easy-to-use, cloud-based interface to explore the models, simulate potential interventions, better understand the mechanisms of the disease, and conduct virtual computational experiments in concert with their experimental and clinical research.
In the second phase, the model and user interface will be refreshed with patient clinical data until the Answer ALS total cohort of 1,000 patient enrollments is complete.
“The ALS Association has made significant investment in precision medicine for ALS by funding the generation of large comprehensive data collections through strategic initiatives Answer ALS, which includes analyses of genetic, proteomic, metabolomic, environmental exposure data, and clinical information from people living with ALS. Using the appropriate tools to mine these data sets is critical to understanding the variability of ALS and how to better design clinical trials. The GNS Healthcare project will begin to address this. (Dr. Lucie Bruijn, Chief Scientist, The ALS Association)
The GNS Healthcare model and interface will be accessible to clinicians and scientists within the ALS research community, supporting our value of collaboration to make all ALS research data available to the entire research community. In addition, the model will be continuously refreshed to ensure the data collected is the most up-to-date to allow for streamlined data mining.
This powerful partnership between the Association, GNS Healthcare, and Answer ALS has the potential to reveal invaluable insights into ALS disease. For example, data mining of the datasets will provide critical information about ALS subpopulations, molecular pathways and disease drivers, and patient disease progression trajectories, as well as a better understanding of patient treatment outcomes.
“We are excited to work with [The ALS Association and Answer ALS] on such a critical initiative. The richness of [Answer ALS’] patient data, coupled with our machine learning technology, will provide the research community with the computer models and newly discovered disease mechanisms needed to unravel the complexities of this devastating disease and, eventually, develop better treatments.” (Dr. Iya Khalil, Co-founder and Chief Commercial Officer, GNS Healthcare)
Through this initiative, we will continue our support and collaboration with Answer ALS to accelerate ALS translational discovery to improve the care of people with ALS.
To join the fight against ALS this month, help spread the word about the disease and keep the momentum. Tell us your story. Bid on an ALS Auction item. Pick up a PopSocket. Host a fundraiser. Make a recurring or one-time donation.
As the ALS Ice Bucket Challenge proved, small actions of a few can have a major impact. Or, as we like to put it, Every Drop Adds Up!