Read a letter to the community from ALS TDI's CEO and CSO, Fernando Vieira M.D. Join Fernando at the ARC Town Hall on April 6th to see a live demo of the ARC Data Commons and offer feedback. Register at https://www.als.net/als-town-hall/.

Dear Members of the ALS Community,

We at the ALS Therapy Development Institute (ALS TDI) recently announced the launch of the ALS Research Collaborative (ARC) –  a groundbreaking initiative that aims to accelerate ALS research around the world.

ARC represents a major evolution and expansion of the Precision Medicine Program (PMP). Since 2014, we have had the privilege of partnering with more than 840 people with ALS to gather extensive data and gain a deeper understanding of this complex disease. And, we knew that this was just the beginning.


The PMP was prescient at its inception. My predecessor as CEO, Steve Perrin, and the rest of the ALS TDI leadership team recognized that this type of program would be essential to better understand ALS long before most even considered a program like this to be possible.


The ALS patient community turned our fledgling pilot study into a massive program by signing up in droves and contributing data as long as they have been able – some for many years. Our participants have shared so many types of data.

  • Through surveys, we’ve learned about their symptoms and their quality of life.
  • Through accelerometers, we’ve learned about their ability to move.
  • Through voice recordings, we measured their ability to speak.
  • Through blood samples, we can study the genome, the RNA, and the species of proteins that drive or predict ALS disease processes.


Collecting the data, a huge effort though it has been, was only the start of the work. The data have needed curation, organization, storage, analyses, and most importantly, to be shared. Over the past two years, these steps have been major priorities here at ALS TDI. The result of this effort is the ARC Data Commons- a custom-built platform that makes this ever-growing ocean of data accessible to researchers from all over the world.


Thanks to the tireless efforts of our team and the unwavering support of our participants, we have now been able to collect and share over 35 terabytes of data through the ARC Data Commons. This is an incredible achievement that would not have been possible without the dedication and generosity of our community.


I am sure that the ARC Data Commons will prove to be an extraordinary asset, giving scientists and clinicians the capability to quickly explore many ideas about what influences ALS disease progression. It is designed to be easy to use – not just for data scientists, but also for bench biologists, clinicians, and people with ALS with an interest in the biology of ALS.


We intend for the ARC Data Commons to have a large impact. To facilitate that, we are absorbing the costs of storing and circulating the data – providing access to all non-profit and academic researchers at no financial cost to them. 


We expect that these data will spark new ideas across the ALS landscape – yielding promising progress for slowing or stopping ALS and new ways to measure when medicines are helping.


Now, I am inviting you to help us build upon ARC. Please join me at the ARC Town Hall on April 6th to see a live demo of the ARC Data Commons and offer your questions and feedback. Register to attend.


Sincerely,
 
Fernando Vieira, M.D.
CEO and Chief Scientific Officer at ALS TDI