Determining genetic and environmental factors that impact ALS incidence, clinical presentation, and disease duration in diverse populations can enable development of efficacious and safe therapies for these communities and for all patients with ALS. To enable increased participation of diverse ethnic and racial groups in research, Target ALS is sponsoring in-community "pop-up" events in collaboration with local non-profit organizations and ALS clinics. This study was launched in December 2024 with the goal of enrolling 5,000 symptomatic ALS participants and 1,000 healthy controls over the next 5 years. There are no exclusion criteria for enrollment. Participants are asked to provide a one-time blood collection and to complete an epidemiological and environmental questionnaire. ALS participants are also asked to complete a self-reported ALSFRS. PacBio long-read whole-genome sequencing is conducted on every DNA sample and shared with the clinical data through the Target ALS Data Engine. A sub-study will also be included for the first 80 ALS and healthy control study participants (40 of each) to consent to optional microbial sequencing using saliva. These ALS and healthy control...
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AGRI Community-Based Pop-Up Outreach Study is published on Target ALS Data Engine.