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 and the ALS Therapy Development Institute, PRO-ACT transformed how ALS data could be used, allowing researchers worldwide to test hypotheses, identify trends, and develop models without launching new trials.
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 Sanofi, the NEALS Biorepository was one of the first centralized biosample resources dedicated to ALS clinical research. It enables participating sites to contribute and access high-quality, well-characterized biosamples, accelerating biomarker discovery, mechanistic insights, and biologically informed trial design.
Key Features of the NEALS Biorepository
Centralized, standardized protocols for collection, processing, and storage
Supports exploratory and confirmatory biomarker work, including fluid and genetic biomarkers
Supports exploratory and confirmatory biomarker work, including fluid and genetic biomarkers