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; 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.

抽象的 UDN CS运营可持续性的主要障碍包括前往和临床的旅行费用 在CS上进行评估。为了克服这一点，参与者及其虚拟参与的发展 医疗保健提供者是关键。这样做，参与者和本地提供商成为UDN的合作伙伴 旅行。这将使UDN CS能够降低人员努力，提高效率并支付成本 推荐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）。我们将调整我们为提供遗传服务提供的可扩展虚拟平台， 即Countryagene为患者和提供者参与提供UDN CS的所有要素。重要的是，它 使参与者和本地提供商能够成为UDN流程的正式合作伙伴，这是实现的关键步骤 可持续性。 Consectagene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一个框架 解决由于广泛可用的遗传服务的需求和未满足的需求不断增长的需求 基因组测序。在UDN的背景下，此类虚拟平台尚未为 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 还确定将影响实施的因素，包括专业，文化和后勤挑战 UDN临床评估的合作模型。