ALS Research Data Portals
These publicly available and community-supported datasets are advancing our understanding of ALS/MND. If you're a researcher, clinician, or data scientist, these portals can accelerate your work.
Available Datasets
PRO-ACT Database
NEALS (Northeast ALS Consortium)
13,115 fully anonymized patient records from 38 Phase II/III clinical trials. 18 million longitudinally collected data points including demographics, labs, medical history, and ALSFRS-R scores. 3,200+ registered users from 87 countries.
ARC Data Commons
ALS Therapy Development Institute (ALS TDI)
Longest-running ALS natural history study. Medical surveys, accelerometer data, speech recordings, genetics.
ALS Focus
ALS Association
Self-reported survey data from ALS patients and caregivers covering demographics, financial burden, clinical experience, and quality of life. Public interactive dashboard available. Downloadable de-identified data files available through Mass General's NeuroVERSE platform (data-sharing terms required).
Target ALS Data Engine
Target ALS · DNAstack · Verily
Postmortem tissue, stem cell, and biofluid datasets for biomarker discovery. Developed with DNAstack and Verily.
Answer ALS Neuromine
Answer ALS Consortium
Multi-omics portal combining clinical data with genomics, proteomics, and transcriptomics.
CDC National ALS Registry
Centers for Disease Control and Prevention
Congressionally mandated US registry with demographic, geographic, and biorepository data on people living with ALS.
ClinicalTrials.gov
U.S. National Library of Medicine
Database of all registered clinical trials worldwide. ALS trials searchable by phase, status, and location.
PubMed
NCBI · National Library of Medicine
Biomedical literature database. ALS research publications searchable by author, institution, and topic.
Know of a dataset we're missing? Let us know.