The development and validation of a novel tool for the assessment of bulbar dysfunction in ALS

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Project Summary The overall aim of our “parent” grant proposal is to develop and validate a clinician-administered bulbar dysfunction assessment tool for Amyotrophic Lateral Sclerosis (ALS), called ALS-Index of Bulbar Dysfunction (ALS-IBD). Interrupted by the SARS-CoV-2 pandemic, clinical practices as well as clinical research have been forced to pivot, simultaneously providing an unprecedented opportunity for the development of new and expansion of existing remote assessment platforms, which can serve clinical and research assessment needs. As part of this pivoting effort, we recently created VirtualSLP, a software tool to support remote, online multi- modal - high quality video/kinematic and audio/acoustic – data collection, using a multi-platform compatible, web-browser based audio and video recordings. In parallel, we have designed a tool for automatic extraction of kinematic and acoustic metrics of neurological diseases, which provides clinically interpretable features/ measures that have been identified as important for detecting and tracking the onset and progression of oro- motor and speech (aka bulbar) impairments in neurological diseases. The next step in the progression of our technology development efforts is to incorporate the automatic metrics extraction software within VirtualSLP, creating a user-friendly and intuitive cloud-based platform for research and clinical assessment of bulbar dysfunction. To achieve rapid development and deployment of VirtualSLP, we will use modern engineering methodology and user-centered design to iterate through a number of steps in the software development cycle. The cycle will begin with the engagement of end users (e.g., researchers, clinicians and patients) in design sessions to document users' current and anticipated end-to-end experiences with the software, while performing the baseline analysis of the existing software components and determining and implementing necessary changes. The necessary components will be incorporated to create VirtualSLP on the Amazon Web Services (AWS) platform, to enhance its usability, interoperability, scalability, and security, as part of the NIH STRIDES initiative. Usability testing of Virtual SLP with end users will be performed throughout the development process and at the end of the development cycle. When completed, the work will result in an enhanced software tool for collection of audio and video data and corresponding AI-based analytics to be used in the context of clinical research. VirtualSLP will propel our specific work on developing a clinician- administered tool for bulbar ALS assessment and monitoring (ALS-IBD-Remote) by providing a novel cloud- based platform for its clinical validation. This work aims to exemplify the intent of the current funding opportunity by supporting collaborations between clinical speech scientists, data scientists, and software engineers to enhance the design, implementation, and "cloud-readiness" of research software.