The Target ALS Global Natural History Study is actively recruiting 800 ALS patients and 200 healthy controls to create the most comprehensive biosample and dataset collection for ALS biomarker discovery and research efforts. This collaborative, international multi-site study has recently expanded from 6 sites to 14 sites across the USA, South America, Israel and aims to address the gaps in data from genetically and ethnically diverse populations across the globe. Clinical data is generated by neurologists from the foremost ALS clinics and multi-omic data from the NYGC, Psomagen, and University of Gothenburg. The study has enrolled more than 200 participants. Data can be viewed, sorted, and mined and is actively updated with new data from additional participants completing the study. This collection currently includes 5 data categories: de-identified clinical and demographic information found in the Redcap Metadata Tab, short read and long read (PacBio) whole genome sequencing files, RNA sequencing files, and metadata files from the New York Genome Center and Psomagen, longitudinal speech data from Aural Analytics platform, and longitudinal measures of respiratory function using...
Access requires approval by the data custodian. The collection's description and structure are public; querying the data requires an approved request.
AGRI Global Natural History Study is published on Target ALS Data Engine.