Championing Open Science and Data Sharing
Long before open science became a guiding principle across biomedical research, NEALS recognized that data sharing could dramatically accelerate discovery .
A defining example is PRO-ACT (Pooled Resource Open-Access ALS Clinical Trials) —the world’s largest open-access ALS clinical trial database. Developed with partners including Prize4Life, the ALS Therapy Development Institute, and Mass General Hospital, PRO-ACT transformed how ALS data could be used, allowing researchers worldwide to test hypotheses, identify trends, and develop models without launching new trials.
A Multiplier Effect
By making data and biospecimens broadly accessible, NEALS has amplified the impact of trials that contribute to shared repositories—enabling discoveries far beyond the studies it directly supports
Complementing PRO-ACT, the NEALS Biorepository established standardized protocols for biospecimen collection and sharing, ensuring quality, reproducibility, and broad access. Established in partnership with the ALS Association, Project ALS, and funded in part by NIH grants, philanthropy, and Sanofi, the NEALS Biorepository was one of the first centralized biosample resources dedicated to ALS clinical research. It enables researchers to contribute and access high-quality, well-characterized biosamples, accelerating biomarker discovery, mechanistic insights, and biologically informed trial design.
NEALS Biorepository Key Features Centralized, standardized protocols for collection, processing, and storage
Available to qualified investigators through a transparent application process Supports exploratory and confirmatory biomarker work , including fluid and genetic biomarkers Integrates with clinical trial design and analysis to support biologically driven endpoints.
Together, these resources shifted ALS research from isolated datasets to a shared global research ecosystem.
Visit the NEALS Sample Repository page to learn more about the sample request process: https://neals.org/als-researchers/neals-sample-repository
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