Given a shared interest in advancing ALS research to move quicker on the path to finding treatments or a cure for the disease, we are pleased to announce a collaboration that will bring together the two largest existing clinical and omics data sets relating to ALS. Through support from Microsoft, the comprehensive data collected through ALS Therapy Development Institute’s Research Collaborative (ARC) will be added to Neuromine, doubling the clinical and genomic data available for research on Azure.

110T

number of data points released to date – by the program’s end, this will be 150 trillion

1200+

participants, including 200 controls, clinical, genomic, transcription, and protein expression data types collected

100%

data generated by Answer ALS is being made available to the global research community

Metadata & Clinical data

Answer ALS has collected clinical data on 1200+ participants from both control and neurodegenerative disease populations. All data is available to download and has been de-identified according to HIPAA standards. You can download this metadata along with the OMIC data but will need to complete a request access form and sign a data use agreement (DUA) before gaining access, ensuring the integrity and intent of the data provided by the program’s participants. The review process is rapid, with a response typically within the week the request is submitted and the DUA is appropriately signed.
Participant enrollment is complete.

We are currently working toward the data generation phase. 

To learn more about Open Access data, please refer to the frequently asked question “What is the difference between Open Source and Open Access to data?” on our FAQ page.

Data Dashboard

To learn more about the disease, we enrolled over 1,000 patients. Here is a small sampling of the data we collected. 

New Data

New Data Added to the Answer ALS Dataset!

The Answer ALS dataset now includes NfL (neurofilament light chain) protein level data for over 900 participants, offering new opportunities to study ALS progression and potential therapeutic targets.

Request access to explore this enriched dataset and join the global effort to advance ALS research.

Community

We will soon be launching the Answer ALS Community Portal where you can connect with other researchers, access additional resources, and have access to a variety of discussion forums, resources, and tools to help you make the most of your research. 

New Tools

New data visualization tools such as heatmaps, boxplots, and PCA are becoming increasingly popular for exploring and presenting complex data insights in a more intuitive and interactive way. Explore the Answer ALS tool suite to investigate your selected cohort data.

A special thank you to each and every one of our program participants and partners.

Please visit our main site to view the full list of our supporters.

The Answer ALS Data Portal Team

OnPoint Scientific

Program Director
Terri Thompson, Ph.D, PMP
terri@onpointsci.com
terri@answerals.org

EPAM Systems

Microsoft