This presentation describes creation of a large, open data platform, comprising speech and video recordings of patients diagnosed with amyotrophic lateral sclerosis (ALS) and healthy controls.  Each subject in the collection is interviewed by a virtual agent, Nina, emulating the role of a neurologist or speech pathologist walking them through speaking exercises. The collected data is made available to the academic and research community to foster acceleration of the development of biomarkers, diagnostics, therapies, and fundamental scientific understanding of ALS.

Recruitment of patients is done through EverythingALS advocacy with over 2,000 subscribers.  Each patient is paired with a healthy control as well as one of the program’s student ambassadors, who are medical students rendering support to subjects. Each subject engages in weekly conversations with Nina. Interview sessions are done once a week, for about ten minutes per session, and produce video recordings of the subject’s face, full-duplex audio recordings, audio and facial measures, measurement of progression using self-reported ALSFRS-R and ROADS, and demographic information.