PANDA MOBILE vs OurVCP

PANDA MOBILE App allows us to collect video data of infants between 1 and 6 months old. We will analyze the videos using state of the art algorithms to build screening tools that can be used in life by lay clinicians and caregivers. The study’s goal is to develop an affordable non-invasive easy-to-use tool for early detection of infant neurodevelopmental disabilities so they can receive treatment at an early age. Significance: In the USA, 1 in 10 infants are born at risk for these disabilities. Early treatment in the first year of life improves long-term outcomes. Today’s clinical tests are however less than adequate. Hard to administer, they require specialized training, and have limited long-term predictive value. There is a critical need for an objective, accurate, easy-to-use tool for early prediction of long-term physical disability. This project’s goal is to develop an automated assessment for early and accurate detection of infants at risk for neurodevelopmental disabilities by capitalizing on state of the art sensing and machine learning technologies. Our project will bring us closer to a universal non-invasive test for early detection of neurodevelopmental disabilities. This test will scale to infants worldwide, producing an affordable tool for infant health assessment. Objectives: Our project has three aims. This effort focuses on aim 2 which is to populate a database of infant videos. We aim to collect at least 1200 unique infant videos (400 with early brain injury, 400 preterm without early brain injury, 400 controls). From the videos we will develop a computer vision algorithm to quantify infant motor performance. Funding: Our project is being funded by the National Institutes of Health – National Institutes of Child Health and Development: R01- HD-097686. We are in partnership with AngelEye Health, a leader in developing cameras for the NICU and monitoring infants."

The OurVCP app is being used for a VCP app and wearable study conducted by 4YouandMe - a digital health non-profit organization in partnership with Cure VCP Disease Inc., and funded by the Chan Zuckerberg Initiative. This prototype app is 1 of 5 apps that are being tested as part of a larger rare and unique disease study that aims to co-design and pilot test symptom tracking and transmitting apps alongside wearable devices across 5 different conditions including VCP disease, Pancreatitis, Long COVID, Sarcoidosis, and Primary Ciliary disease. Each of these conditions present unique symptom profiles across individuals that span symptoms of cognitive disturbances, pain, fatigue, cough, autonomic changes, respiration changes and mental health burden that are unique to each individual. This study aims to work with participants as co-designers to beta test an app and wearable experience that is intended to work like a compass to empower individuals to follow their unique symptom trajectories in passive and active ways, better understand what makes their condition better or worse and provide more accurate information for clinicians. If you decide to participate, after having a conversation with a 4YouandMe representative, you will download this study app where you will be fully informed of the study details and sign a consent form agreeing to participate. This app will serve as a hub for study participation. Using this app, you can track your study progress, complete surveys and tasks, and connect other mobile apps and wearable/smart devices that will be provided to you that will include an Oura smartring, an Applewatch and a MIR Smart One Spirometer. You will be asked to use the study app and wear and use the provisioned devices for 5 months and communicate with a 4YouandMe Engagement Specialist every 2 weeks to discuss your experience. We expect that using the app for the study will take less than 5 minutes daily. This study has been reviewed and approved by an Institutional Review Board (Advarra).