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

利用遗传服务提供虚拟平台扩大和维持 UDN 临床站点运营

• 批准号: 10377271
• 负责人: Carlos A. Bacino
• 金额: $ 15万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-07-01 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10377271
• 关键词: Address; Adopted; Adult; Affect; Caring; Childhood; Client; Clinical; Clinical assessments; Comparative Study; Complement; Consent; Consultations; Counseling; Data; Data Analyses; Development; Documentation; Education; Elements; Evaluation; Funding; Future; Generations; Genetic; Genetic Counseling; Genetic Services; Genomics; Goals; Government; Health Insurance Portability and Accountability Act; Health Personnel; Human Genetics; Human Resources; Learning Module; Logistics; Medical; Medical Genetics; Medical Records; Medicine; Modeling; Molecular Genetics; Participant; Patients; Persons; Physicians; Pilot Projects; Preparation; Privatization; Process; Provider; Records; Research; Schedule; Study models; Surveys; Testing; Travel; Videoconferencing; Visit; base; clinical care; clinical phenotype; clinical research site; college; comparative efficacy; cost; data sharing; efficacy study; exome sequencing; experience; genetic pedigree; genome sequencing; genomic data; health care referral; member; multidisciplinary; multiple omics; operation; patient engagement; peer; research clinical testing; response; satisfaction; service delivery; standard of care; telehealth; tool; transcriptome sequencing; virtual; virtual platform; whole genome

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.

摘要 UDN CS业务可持续性的一个主要障碍包括前往和临床的费用 在CS的评价。为了克服这一点，发展参与者及其 卫生保健提供者是关键。这样，参与者和当地供应商成为UDN的合作伙伴 旅程这将使UDN CS能够减少人员工作量，提高效率，并支付 建议的护理标准研究，可能由当地付款人（私人第三方和 政府付款人）。我们将采用我们开发的可扩展虚拟平台，用于提供遗传服务， 也就是说，Consultagene，提供UDN CS的所有元素，以促进患者和提供者的参与。重要的是 使参与者和当地供应商成为UDN过程中的全面合作伙伴，这是实现 持续发展Consultagene是第一个整合遗传学服务的学术虚拟平台， 遗传学教育、遗传学咨询和遗传咨询。它提供了一个平台和框架， 解决由于广泛提供的遗传服务而日益增加的需求和未满足的不断变化的需求， 基因组测序在UDN的背景下，此类虚拟平台尚未开发 整合研究参与、远程医疗评估和基因组数据共享。在这个试点项目中，我们将 还确定影响实施的因素，包括专业、文化和后勤方面的挑战， UDN临床评价的合作模式。