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

摘要 UDNCS运营可持续性的一个主要障碍包括差旅和临床费用 在CS进行评估。为了克服这一点，发展参与者和他们的虚拟参与 医疗保健提供者是关键。在这样做的过程中，参与者和当地提供商成为UDN中的合作伙伴 旅行。这将使UDN CS能够减少人员工作量、提高效率并覆盖以下方面的成本 建议的护理研究标准，可能由当地付款人(包括私人第三方和 政府支付者)。我们将采用我们开发的可扩展的虚拟平台来提供遗传服务， 即Consultagene，为患者和提供商提供UDNCS的所有要素。重要的是，它 使参与者和当地提供者成为统一域名进程的全面合作伙伴，这是实现以下目标的关键步骤 可持续发展。Consulagene是第一个整合遗传学服务的学术虚拟平台，包括 遗传学教育、遗传学咨询、遗传咨询。它提供了一个平台和框架来 解决日益增长的需求和由于广泛可用的遗传服务而未得到满足的、不断变化的需求 基因组测序。在统一数字网络的背景下，这样的虚拟平台还没有为 整合研究参与、远程健康评估和基因组数据共享。在这个试点项目中，我们将 还要确定影响实施的因素，包括专业、文化和后勤方面的挑战 UDN临床评估的合作模式。

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.