eMERGE Phase IV Clinical Center at Mass General Brigham

麻省总医院布里格姆分校 eMERGE IV 期临床中心

• 批准号: 10834530
• 负责人: ELIZABETH W KARLSON
• 金额: $ 23.31万
• 依托单位: BRIGHAM AND WOMEN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10834530
• 关键词: Address; Administrative Supplement; All of Us Research Program; Baseline Surveys; Biomedical Research; Black race; Clinical; Clinical Trials; Collection; Communication; Communication Methods; Communication Research; Communication Tools; Comprehension; Consent; Data; Data Collection; Decentralization; Disparity; Education; Electronic Health Record; Electronic Mail; Electronic Medical Records and Genomics Network; Ensure; Equity; Ethnic Origin; Family; Genetic; Genome; Goals; Healthcare; Hispanic; Individual; Language; Latino; Learning; Longitudinal Studies; Methods; Modeling; Participant; Phase; Questionnaires; Race; Recording of previous events; Reporting; Research; Risk; Risk Factors; Sampling; Site; Source; Surveys; Telephone; Text; Time; Translating; clinical center; clinical practice; disparity elimination; experience; follow-up; health disparity; health equity; improved; novel; programs; recruit; response; sample collection

Abstract: To improve health equity in implementation of Genome Informed Risk Scores (GIRA) in clinical practice, the eMERGE IV administrative supplement proposal leverages our expertise from leading the All of Us Research Program retention campaign, and the MGB Decentralized Clinical Trials Program, we are proposing to deploy novel communication methods and research navigator workflows to enhance recruitment and retention in eMERGE. Specific aims: Aim 1: Enhance equity in recruitment and return of GIRA results by employing novel communications methods to diverse participants at baseline and at follow-up survey time points. We will develop culturally sensitive new recruitment materials for Hispanic/Latino and Black participants, utilizing plain language and graphics to explain study steps more clearly, explain that survey completion is required to receive results and the importance of fully engaging at all points in this longitudinal study. Our Spanish-speaking team will translate existing study materials to improve comprehension by Hispanic/Latino participants. New and existing materials will be shared throughout the eMERGE network to reduce survey data missingness and improve health equity. Aim 2: Deploy a research navigator model with a diverse study team, to assign a navigator to each participant, to guide and assist participants at each step in eMERGE from consent, survey completion, sample collection, GIRA return, through collection of follow-up surveys. We will use omni-channel communications based on participant choice (phone, text, email) and track successful methods to inform the eMERGE network whether the navigator model with personalized communication methods can be used at other sites. For participants who do not complete surveys, we will perform chart reviews to collect key variables needed for GIRA to increase the rate of equitable data collection and return of GIRA reports with minimal missing data on demographic, clinical, and family history risk factors. Given the striking disparities in data missingness the early phase of eMERGE IV by race and ethnicity, and the decision by the network not to send samples for PRS analysis unless baseline survey data is provided by participants, the study is at risk for introducing disparities in the return of results, thus biasing its conclusions. Achieving health equity requires extra effort and focused methods to enhance education, encourage full participation at each step of the program, provide assistance at an individual level and gather data from available sources such as EHRs if we aim to eliminate disparities in health and health care. Lessons learned in this administrative supplement will be shared across the eMERGE network to enhance health equity of the entire study.

摘要：改善基因组知情风险评分实施健康平等（GIRA） 在临床实践中，出现的IV行政补充提案利用我们的专业知识 从领导我们所有的研究计划保留运动，以及MGB分散的 临床试验计划，我们建议部署新颖的交流方法和研究 导航器工作流程以增强出现的招聘和保留。具体目的：目标1： 通过采用新颖的沟通来提高GIRA结果的招聘和返回 在基线和后续调查时间点上的不同参与者的方法。我们将发展 使用文化敏感的西班牙裔/拉丁裔和黑人参与者的新招聘材料 简单的语言和图形可以更清楚地解释研究步骤，解释调查完成 必须接受结果，并且在这个纵向中的所有点都充分参与的重要性 学习。我们讲西班牙语的团队将翻译现有的学习材料以改进 西班牙裔/拉丁裔参与者的理解。新的和现有的材料将分享 在整个出现的网络中，以减少调查数据丢失并改善健康公平。 目标2：与多元化的研究团队一起部署研究导航器模型，将导航员分配给 每个参与者，指导和协助参与者在同意下出现的每个步骤，调查 通过收集后续调查，完成，样本收集，GIRA返回。我们将使用 基于参与者选择（电话，文本，电子邮件）和跟踪的全渠道通信 成功通知出现网络的成功方法是否使用导航器模型 个性化通信方法可以在其他站点使用。对于那些没有的参与者 完成调查，我们将执行图表评论，以收集Gira所需的关键变量 提高公平数据收集的速度和GIRA报告的回报率，而缺失最少 有关人口，临床和家族史风险因素的数据。考虑到明显的差异 数据缺失是种族和种族出现的IV的早期阶段，以及 除非提供基线调查数据，否则网络不发送样本进行PRS分析 参与者，该研究有可能在结果回报中引入差异的风险，从而使其偏见 结论。实现健康公平需要额外的努力和集中的方法来增强 教育，鼓励在计划的每个步骤中充分参与，并在 如果我们旨在消除个人级别，并从可用来源（例如EHR）收集数据 健康和卫生保健方面的差异。在这种行政补充中汲取的教训将是 在Emerge网络上共享，以增强整个研究的健康平等。

项目成果

Vascular Geometry Associated with Anterior Communicating Artery Aneurysm Formation.

• DOI: 10.1016/j.wneu.2020.11.160
• 发表时间: 2021-03
• 期刊: World neurosurgery
• 影响因子: 2
• 作者: Zhang J;Can A;Lai PMR;Mukundan S Jr;Castro VM;Dligach D;Finan S;Gainer VS;Shadick NA;Savova G;Murphy SN;Cai T;Weiss ST;Du R
• 通讯作者: Du R

locStra: Fast analysis of regional/global stratification in whole-genome sequencing studies.

• DOI: 10.1002/gepi.22356
• 发表时间: 2021-03
• 期刊: Genetic epidemiology
• 影响因子: 2.1
• 作者: Hahn G;Lutz SM;Hecker J;Prokopenko D;Cho MH;Silverman EK;Weiss ST;Lange C;NHLBI Trans-Omics for Precision Medicine (TOPMed) Consortium
• 通讯作者: NHLBI Trans-Omics for Precision Medicine (TOPMed) Consortium

The Mass General Brigham Biobank Portal: an i2b2-based data repository linking disparate and high-dimensional patient data to support multimodal analytics.

• DOI: 10.1093/jamia/ocab264
• 发表时间: 2022-03-15
• 期刊: Journal of the American Medical Informatics Association : JAMIA
• 作者: Castro VM;Gainer V;Wattanasin N;Benoit B;Cagan A;Ghosh B;Goryachev S;Metta R;Park H;Wang D;Mendis M;Rees M;Herrick C;Murphy SN
• 通讯作者: Murphy SN

Genomic medicine in the military.

• DOI: 10.1038/npjgenmed.2015.8
• 发表时间: 2016
• 期刊: NPJ genomic medicine
• 影响因子: 5.3
• 作者: De Castro M;Biesecker LG;Turner C;Brenner R;Witkop C;Mehlman M;Bradburne C;Green RC
• 通讯作者: Green RC

Association between inflammation and systolic blood pressure in RA compared to patients without RA.

与非 RA 患者相比，RA 患者炎症与收缩压之间的关联。

• DOI: 10.1186/s13075-018-1597-9
• 发表时间: 2018
• 期刊: Arthritis research & therapy
• 影响因子: 4.9
• 作者: Yu,Zhi;Kim,SeoyoungC;Vanni,Kathleen;Huang,Jie;Desai,Rishi;Murphy,ShawnN;Solomon,DanielH;Liao,KatherineP
• 通讯作者: Liao,KatherineP