About the ALS Knowledge Portal

The ALS Knowledge Portal is developed as part of the Accelerating Medicines Partnership® Program for Amyotrophic Lateral Sclerosis (AMP®-ALS), a public-private partnership led by the National Institutes of Health (NIH) and the Foundation for the National Institutes of Health (FNIH), with input from the ALS community to advance ALS research and treatment development.

The portal is a public repository that shares data, analyses, and tools generated by collaborative research programs focused on amyotrophic lateral sclerosis (ALS). Built on open science principles, the portal enables rapid data release in line with the NIH Genomic Data Sharing Policy and distributes resources under FAIR (Findable, Accessible, Interoperable, and Reusable) guidelines.

Learn more about this transformative collaboration at FNIH.

ALS Knowledge Portal ↔︎ Synapse ↔︎ Sage Bionetworks

What is the relationship between the ALS Knowledge Portal, Synapse, and Sage Bionetworks?

Sage Bionetworks	Sage Bionetworks, a nonprofit research organization based in Seattle, develops and operates the ALS Knowledge Portal. Our mission is to advance open science and promote patient engagement in biomedical research. The platform is designed, built, and maintained by our multidisciplinary team of scientists, software engineers, and designers.
ALS-DCC	The ALS Knowledge Portal Data Coordinating Center (ALS-DCC) at Sage Bionetworks is responsible for: Reviewing contributed data to ensure compliance with funding requirements Supporting data contributors in the submission and dissemination of their datasets Facilitating collaboration among research teams Distributing data to the broader research community Providing user support for data exploration and visualization tools
Sage Governance	The Sage Governance team is responsible for: Creating frameworks that protect participant privacy and ensure compliance Managing data transfer and sharing agreements with institutions Serving as the Data Access Committee (DAC) for controlled-access requests Supporting data contributors and users through governance policies Leading the ALS Knowledge Portal Publication Committee
Synapse	Synapse, the software platform that underlies the portal, provides the infrastructure for collaborative data curation, secure storage, analysis, and provenance tracking. Synapse serves as the back end where data is managed.
ALS Knowledge Portal	The ALS Knowledge Portal functions as the front end entry point for exploring and accessing shared content. Data are made available through the portal, where researchers can easily search, view, and interact with them.

Additional Tools

Analysis Platforms

Users of the ALS Knowledge Portal are able to send data directly to a CAVATICA and Terra Workspace in order to run downstream analyses. This integration is one step toward a greater goal to provide seamless, secure access to biomedical datasets made available through the ALS Knowledge Portal in as many analytical environments as possible.

You can read more about how to access analysis platforms here: Analysis Platforms.

Disclaimer

These integrations or provisions do not signify an endorsement of any particular environment by Sage Bionetworks or funders, nor does it alter the relationship between Sage Bionetworks, existing data contributors, project sponsors or funders, or computational providers.

Furthermore, it is the responsibility of individual users to review the terms of data use for each compute environment, as well as for the portal or repository from which the data is sourced. Users must personally ensure that all data access terms and conditions are met.