ALL ALS
Access for ALL in Amyotrophic Lateral Sclerosis (ALS) is a clinical research consortium of 35 institutions funded by the National Institutes of Health (NIH) to conduct a longitudinal natural history study of ALS. ALL ALS includes multiple cohorts with the shared goal of collecting biospecimens and deep phenotyping data from individuals currently living with ALS, as well as individuals genetically at-risk for developing ALS, to improve understanding of disease pathways, identify targets for treatment, and develop biomarkers.
Study Participants
ALL ALS includes multiple cohorts, including individuals diagnosed with ALS, controls, and individuals with known gene mutations associated with ALS or a family history of ALS. ALS patients, and genetically at-risk individuals are followed for 2-3 years, with visits conducted multiple times per year both in clinic and remotely.
ALL ALS will enroll more than 2,000 individuals.
Available Data
Data collected and generated through ALL ALS will be available through the ALS Knowledge Portal (in development). Data in the portal are linked to the biospecimens.
CLINICAL: ALS Functional Rating Scale-Revised (ALSFRS-R), hand-held dynamometry (HHD), Vital Capacity (VC), Edinburgh Cognitive Assessment Scale (ECAS), survival data, and additional Patient Reported Outcomes (PROs)
BIOLOGIC: TBD
GENETIC: genotyping for known ALS-risk genes will be made available
Available Biospecimens
DNA and RNA from blood, PBMCs, plasma, serum, whole blood, and CSF
Catalog coming soon! Please email biosend@iu.edu for information about currently available samples.