Trans-America Consortium of the Health Care Systems Research Network for the All of Us Research Program

全美医疗保健系统研究网络泛美联盟研究计划

• 批准号: 10090732
• 负责人: Brian Kenneth Ahmedani
• 金额: $ 1200万
• 依托单位: HENRY FORD HEALTH SYSTEM
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-04-01 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10090732
• 关键词: African American; All of Us Research Program; American; Americas; Arabs; Biological; Biomedical Research; Caring; Child; Clinical; Communities; Data; Development; Enrollment; Epidemiology; Evidence based treatment; Health; Healthcare Systems; Hispanics; Individual; Infrastructure; Inherited; Interest Group; Life Style; Link; Measures; Medical; Medicine; Minority; Participant; Patients; Persons; Pharmaceutical Preparations; Pharmacogenomics; Physiological; Population; Preparation; Prevention strategy; Preventive Intervention; Procedures; Process; Provider; Public Health; Publishing; Ramp; Recording of previous events; Research; Research Infrastructure; Research Personnel; Resources; Risk Factors; Scientist; Site; Subgroup; Technology; Time; Variant; Work; analytical tool; base; clinical practice; cohort; common treatment; cost; design; disorder risk; evidence base; experience; flexibility; improved; individual patient; infancy; low socioeconomic status; next generation sequencing; patient oriented; patient population; personalized medicine; precision medicine; preference; recruit; rural dwellers; side effect; study population; systems research; tool; treatment effect; treatment response; treatment strategy

Clinicians throughout history have worked to tailor both prevention and treatment strategies to the individual patient’s needs; it is a fundamental credo to the practice of medicine. However, the vast majority of evidence-based clinical practice is based on research results acquired from measuring the common treatment effect on the “average person” in a restricted patient population with limited data, which we now know does not necessarily apply to numerous patients in the real-world setting. Thus, some patients will benefit from evidence-based treatments and preventative interventions, while others will be harmed by taking medications or undergoing processes and procedures that are at best non-effective and at worst cause serious side effects. However, since the initiation of pharmacogenomics in the mid-90s, the astounding pace of development of the technical and analytic tools to measure individual inherited and acquired biological variations at all physiological levels, as well as efficiently capture a patient’s medical and risk factor history and personal preferences via electronic means, is at a scale never before known.(PMIDs: 26554403, 26804248,26802434,26686739, 26769233, 26702339, 26700443, 26764593, 25231862) The current concept of “Personalized Medicine” or “Precision Medicine” in which these tools can be deployed to sharply hone predictions about an individual’s risk for disease or response to treatment, while still in its infancy, has immeasurable potential.(PMIDs:20551152,26014593,26810587) Further, the costs for next generation sequencing are expected to continue to decline as technology advances. (PMIDs: 24217348, 26195686) As resources are becoming increasingly constrained, it is important to devote scientific time, energy and dollars to questions that matter to the community and have strong potential for effectively improving medical care, public health and wellness. Hence the need, creation, and continuing development of the All of Us Research Program (AoURP). (http://www.pmwcintl.com/francis-collins-nih-qa/) The promise of Precision Medicine in the U.S. can be most effectively realized on a large scale in the next decades if a research infrastructure is established and accessible to scientists across the nation and includes a large and engaged study population with comprehensive health and lifestyle histories linked to biospecimens. Critically, this population must be diverse, representing minority and other subgroups underrepresented in biomedical research. (PMID:23571593) Further, as our investigators and others have recently published, the need to engage all stakeholders, including patients and providers, into both the research and “integration into practice” aspects of Precision Medicine as it progresses, is widely recognized. (PMID:27787499, 27669484, 20805700, 22962560,23780455, 24030437,26195686) Our Consortium objective is to recruit 93,000 participant partners into the AoURP, with a focus on African Americans, Arab Americans, Hispanics, rural residents, persons of low socioeconomic status (SES) and children, with the ability to target other groups of interest as needed. Now that we are rapidly ramping up engagement efforts in preparation for AoURP national launch, we will capitalize on an influx of appropriate resources and our experience in engaging, recruiting and retaining large numbers of participants in epidemiological and clinical cohorts, along with our patient-centered and process improvement approaches, to efficiently maximize recruitment and retention in the AoURP.

整个历史上的临床医生一直致力于调整预防和治疗策略 满足个人患者的需求；这是医学实践的基本信条。但是，广大 大多数基于证据的临床实践是基于通过测量的研究结果 在受限的患者人群中，对“普通人”的常见治疗影响有限，这 我们现在知道，在现实环境中不一定适用于众多患者。那，有些病人 将受益于基于证据的治疗和预防性干预措施，而其他人则将受到损害 服用药物或正在进行的过程和程序，充其量是无效的，最糟糕的 引起严重的副作用。但是，自从90年代中期的药物基因组学倡议以来 技术和分析工具开发的惊人空间，以衡量个体继承和 在所有物理水平上都获得了生物学变异，并有效捕获患者的医疗和 风险因素历史记录和通过电子方式的个人偏好是从未有过的规模。（PMIDS： 26554403，26804248，26802434，26686739，26769233，26702339，26700443，26764593，25231862） 当前的“个性化医学”或“精度医学”的概念可以部署这些工具 关于一个人的疾病风险或对治疗的反应的巨大预测，而仍在 婴儿期，具有不可估量的潜力。（PMID：20551152,26014593,26810587） 随着技术的进步，预计生成测序将继续下降。 （PMIDS：24217348， 26195686）随着资源变得越来越限制，降低科学时间很重要， 对社区重要的问题的能源和美元有效地有效 改善医疗保健，公共卫生和健康。因此，需要，创造和持续发展 我们所有的研究计划（AOURP）。 （http://www.pmwcintl.com/francis-collins-nih-qa/） 在美国，在美国，精确医学的承诺可以在下一个大规模实现 数十年来，如果全国科学家建立了研究基础设施并可以访问，并且包括 与生物测量有关的全面健康和生活方式历史的大型研究人群。 至关重要的是，这个人口必须是潜水员，代表少数群体和其他人为的人数不足 生物医学研究。 （PMID：23571593）此外，正如我们的调查人员和其他人最近发表的那样， 需要让所有利益相关者（包括患者和提供者）参与研究，并将 练习”精确医学的方面被广泛认可。（PMID：27787499，27669484， 20805700，22962560,23780455，24030437,26195686）我们的财团目标是招募93,000 参与者的合作伙伴进入了AOURP，重点是非洲裔美国人，阿拉伯美国人，西班牙裔，农村 居民，低社会经济地位（SES）的人和儿童，能够针对其他群体 根据需要的兴趣。现在，我们正在迅速加强参与工作，为Aourp National做准备 启动，我们将利用适当资源的影响以及我们在参与，招聘和 保留大量参与者的流行病学和临床人群，以及我们以患者为中心的 和过程改进方法，有效地最大化AOURP的招聘和保留率。