ALS Association Awards $620,000 Grant to Packard Center, Answer ALS to Support World’s Largest Open-Source ALS Data Portal


Washington, D.C., December 13, 2021 – The ALS Association announced today that it has awarded a $620,000 grant to the Packard Center for ALS Research at Johns Hopkins to support the Answer ALS Data Portal. Launched in January this year, the Data Portal provides open access to the world’s most comprehensive collection of ALS data. 

“This portal provides researchers from around the world access to clinical data linked with molecular data to better understand the underlying biology of the disease,” said Neil Thakur, Ph.D. of The ALS Association. “Studying this data allows us to understand the different subtypes of this complex disease and find new therapeutic targets and pathways to test in the future.” 

The data, which comprise in-depth clinical profiles and big data multi-omics, were collected from over 1,000 ALS and healthy control participants. They will provide an unprecedented resource for scientists studying the disease.

“These are the building blocks that lay the foundation to bring precision medicine to ALS” said Emily Baxi, Ph.D., executive director of the Packard Center. “The Answer ALS Research Program was designed to generate the data and resources necessary for scientists to investigate if ALS is a disease comprised of subgroups – each with unique features that could be specifically targeted for therapeutic design. We are incredibly grateful to The ALS Association for this recognition and support.”

The portal was custom designed to allow researchers to easily search, filter, and download the data that is most relevant to their studies. 

“We designed the portal to make it straightforward for any user to browse our data and select a cohort of interest for further investigation,” said Terri Thompson PhD, director of data operations at Answer ALS. “The combination of rich clinical data with the omic assay data makes it a powerful tool for discovery. With the commitment and support of the ALS Association, we can ensure this data is available to all researchers for years to come.” 

Through the application of cutting-edge artificial intelligence and machine learning, researchers can gain insights into the biological pathways that initiate and drive disease. These pathways then become potential targets for future therapeutic development and biomarkers. 

About The ALS Association
The ALS Association is the largest philanthropic funder of ALS research in the world. The Association funds global research collaborations, assists people with ALS and their families through its nationwide network of chapters and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association builds hope and enhances quality of life while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website at

About the Robert Packard Center for ALS Research
The Robert Packard Center for ALS Research at Johns Hopkins is the only international scientific operation dedicated solely to curing amyotrophic lateral sclerosis (ALS). The Center is unique in their approach to fighting ALS, a motor neuron disease also known as Lou Gehrig's Disease, in that they combine and facilitate scientific collaboration and ALS research with fundraising for the development of new treatments and with a goal of finding a cure to the disease.  More information on the Packard Center can be found at

For more information, contact:
Brian Frederick
The ALS Association
[email protected]
(202) 464-8612