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

纵观历史，临床医生一直致力于制定预防和治疗策略 满足个别病人的需要；这是行医的基本信条。然而，广大的 大多数循证临床实践是基于通过测量 在数据有限的受限患者人群中对“普通人”的常见治疗效果，即 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 服药或接受往好里说无效、往坏里说不好的过程和程序 会引起严重的副作用。然而，自90年代中期药物基因组学启动以来， 技术和分析工具的发展速度令人震惊，以衡量个人遗传和 在所有生理水平上获得生物变异，以及有效地捕获患者的医疗和 通过电子手段的风险因素历史和个人偏好达到了前所未有的规模。 26554403、26804248、26802434、26686739、26769233、26702339、26700443、26764593、25231862) 当前的“个性化医学”或“精确医学”的概念，其中这些工具可以被部署到 尖锐地磨练对个人的疾病风险或治疗反应的预测，同时仍处于 婴儿期，具有不可估量的潜力。(PMID：20551152,26014593,26810587)进一步，下一步的成本 随着技术的进步，预计世代测序将继续下降。(PMID：24217348， 26195686)随着资源变得越来越有限，重要的是投入科学时间， 将精力和金钱投入到对社区至关重要并具有强大潜力的有效解决问题上 改善医疗保健、公共卫生和健康。因此，需要、创造和持续发展 我们所有人的研究计划(AoURP)。(http://www.pmwcintl.com/francis-collins-nih-qa/) 精准医学在美国的承诺在下一年可以最有效地大规模实现 如果研究基础设施已经建立，并可供全国科学家使用，则需要数十年，其中包括 具有与生物寄生虫相关的全面健康和生活方式史的大量积极参与的研究人群。 关键的是，这一群体必须是多样化的，代表少数群体和其他在 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，都参与到研究中来，并将其整合到 实践“方面的精密医学，随着它的进步，是被广泛认可的。(PMID：27787499,27669484， 20805700,22962560,23780455,24030437,26195686)我们的目标是招募93,000人 AoURP的参与者伙伴，重点是非洲裔美国人、阿拉伯裔美国人、西班牙裔美国人、农村人 居民、社会经济地位低的人和儿童，有能力针对其他群体 利息视需要而定。现在，我们正在迅速加大参与力度，为AoURP全国会议做准备 推出后，我们将利用涌入的适当资源和我们在接触、招聘和 在流行病学和临床队列中保留大量参与者，以及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扩大AoURP的招聘和保留。

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.