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.

历史上的临床医生一直致力于制定预防和治疗策略 这是医学实践的基本信条。但绝 大多数基于证据的临床实践是基于从测量 在数据有限的有限患者人群中，对“普通人”的常见治疗效果， 我们现在知道，这并不一定适用于现实世界中的许多患者。因此，一些患者 将受益于循证治疗和预防性干预，而其他人将受到伤害， 服用药物或经历最好的情况下无效、最坏的情况下无效的过程和程序 会引起严重的副作用然而，自从药物基因组学在90年代中期开始以来， 以惊人的速度发展的技术和分析工具，以衡量个人的遗传和 获得所有生理水平的生物变异，以及有效地捕捉患者的医疗和 风险因素的历史和个人喜好，通过电子手段，是在一个规模前所未有的。（PMID： 26554403、26804248、26802434、26686739、26769233、26702339、26700443、26764593、25231862） 目前的“个性化医疗”或“精准医疗”概念，其中这些工具可以部署到 急剧磨练预测个人的疾病风险或对治疗的反应，而仍然在其 婴儿期，具有不可估量的潜力。（PMID：20551152，26014593，26810587）此外， 随着技术的进步，世代排序预计将继续下降。（PMID：24217348， 26195686）随着资源越来越有限，投入科学时间， 能源和美元的问题，重要的社区，并有很大的潜力，有效地 改善医疗保健、公共卫生和健康。因此，需要，创造和持续发展 我们所有人研究计划（AoURP）的。(http：//www.pmwcintl.com/francis-collins-nih-qa/） 美国精准医疗的承诺可以在未来大规模有效实现。 如果建立了研究基础设施，全国各地的科学家都可以使用， 研究人群庞大且参与性强，具有与生物标本相关的全面健康和生活方式史。 至关重要的是，这一人口必须是多样化的，代表少数群体和其他在人口中代表性不足的亚群体。 生物医学研究(PMID：23571593）此外，正如我们的研究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，参与研究和“融入 随着精准医学的发展，“实践”方面得到了广泛的认可。(PMID电话：27787499，27669484， 20805700、22962560、23780455、24030437、26195686）我们联合体的目标是招募93000人 参与者合作伙伴进入AoURP，重点是非洲裔美国人，阿拉伯裔美国人，西班牙裔，农村 居民、社会经济地位低的人和儿童，有能力针对其他群体， 需要的兴趣。现在，我们正在迅速加大参与力度，为AoURP国家 启动后，我们将利用适当资源的流入以及我们在参与、招聘和 在流行病学和临床队列中保留大量参与者，沿着我们以患者为中心的 和流程改进方法，以有效地最大限度地提高AoURP的招聘和保留。