ALS Data Sets, Data Analysis Tools, and Data Visualization Platforms

ALS Online Database (ALSoD) – collates information about genes and genetic variants connected to ALS. Includes links to publications and summary information on each gene, strength of evidence, lists of variants, and phenotype visualizations incorporating age of onset, sex, site of onset, family history, and variant type.

Answer ALS Data Portal – Incorporates de-identified clinical information on 1,200+ participants, linked to comprehensive genomic, epigenomic, proteomic, and transcriptomic data. The data can be explored with multiple analysis and visualization tools, downloaded, and used to identify and order the corresponding Answer ALS Cell Lines.

CDC National Amyotrophic Lateral Sclerosis (ALS) Registry – Congressionally mandated program to collect, manage, and analyze data about persons with ALS. Extensive demographic and risk factor data is available, including residential and occupational histories, toxic and environmental exposures, family history, trauma, military history, and more. There is an online Research Application Form to request access to the data.

ClinGen ALS Gene-Disease Validity Classification Reports – ClinGen is an NIH-funded resource dedicated to defining the clinical relevance of genes and variants for use in precision medicine and research. The ALS Gene Curation Expert Panel, chaired by ALSRP Programmatic Panel member Dr. Matthew Harms, MD, evaluates the evidence for genes that have been linked to the phenotype of ALS, and generates detailed classification reports for each gene.

Database of Genotypes and Phenotypes (dbGaP) – Archives and distributes data and results from studies examining the interaction of genotype and phenotype in humans.

Hammell Lab (at CSHL) Bioinformatics Software for high throughput sequencing analysis, particularly useful in analysis of transposable elements and other repetitive sequences. Have been used to analyze the NYGC ALS Consortium data (see manuscript) and for several other ALS-retrotransposon projects.

NEALS Historical Trial Data – De-identified data from multiple ALS trial databases, available for researchers to mine. To request access to NEALS data please fill out the Data Request Form and submit to: Tara Lincoln, NEALS Director of Operations, at tlincoln@neals.org.

NYGC ALS Consortium – A partnership of clinicians, basic scientists, geneticists, and computational biologists from 42 institutions around the globe to apply whole genome sequencing and functional genomics to the study of ALS. The current dataset contains WGS data from >4,300 ALS cases and >1,800 controls, linked to harmonized clinical phenotype data. For more information, contact cgnd_help@nygenome.org.

Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) Database – Over 10,700 fully de-identified clinical patient records from the placebo and treatment-arm data of 23 Phase II/III Clinical Trials. Includes demographic, lab, medical, and family history, and other data elements. More than 10 million longitudinally collected data points.

Project MinE – Project to perform whole-genome sequencing (WGS) of 15,000 ALS patients and 7,500 controls. The current dataset >10,900 DNA profiles, of which >6,000 profiles are available via an online open-access Data Browser. There is an online form to request the WGS and GWAS data sets.

NYGC ALS Spatial Transcriptomics Portal – An interactive data exploration portal for the spatial transcriptome atlas of the ALS spinal cord. Includes multiple time points in G93A and wildtype mice, and postmortem human spinal cord. Downloadable user guide and companion manuscript.