Expanding and sustaining UDN clinical site operations by leveraging a virtual platform for genetic services delivery

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ABSTRACT A major obstacle for sustainability of the UDN CS operations include cost of travel to and clinical evaluation at the CS. To overcome this, development of virtual engagement of both participants and their health care providers is key. In so doing, the participant and local providers become partners in the UDN journey. This will enable UDN CS to reduce personnel effort, increase efficiency, and cover costs for recommended standard of care studies that can potentially be borne by local payors (both private 3rd party and government payors). We will adapt a scalable virtual platform developed by us for delivery of genetic services, i.e., Consultagene, to deliver all elements of the UDN CS for patient and provider engagement. Importantly, it enables the participant and local providers to be full partners in the UDN process, a key step in achieving sustainability. Consultagene is the first academic virtual platform to integrate genetics services including genetics education, genetics consultation, and genetic counseling. It provides a platform and a framework to address the increasing demands and unmet, evolving needs for genetic services due to widely available genomic sequencing. In the context of the UDN, such virtual platforms have not been developed for integrating research engagement, telehealth evaluation, and genomic data sharing. In this pilot project, we will also identify factors that will affect implementation including professional, cultural, and logistical challenges for a cooperative model for UDN clinical evaluations.