Engaging All of Us for Effective Precision Medicine

让我们所有人参与有效的精准医疗

• 批准号: 10162869
• 负责人: LOUISA A STARK
• 金额: $ 201.48万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-08-15 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10162869
• 关键词: African; African American; Alaska Native; All of Us Research Program; American Indians; Arts; Award; Biological Sciences; Clinical Sciences; Collaborations; Communities; Complex; Cultural Diversity; Educational Materials; Engineering; Evaluation; Face; Family; Genetic; Genetic Medicine; Genomic medicine; Health; Hispanics; Immigrant; Latino; Learning; Lesbian Gay Bisexual Transgender Queer; Methods; Mission; Pacific Island Americans; Patients; Program Development; Provider; Refugees; Research Personnel; Rights; Science; Science of genetics; Secure; Talents; Therapeutic; Translational Research; Trust; Underrepresented Groups; Universities; Utah; Visualization; Writing; base; clinical center; community organizations; community partnership; design; digital; experience; game development; graduate student; improved; member; personalized medicine; precision medicine; programs; research study; science education; web site

The University of Utah and its community partners will bring a combination of experience and expertise that is well-suited to developing and evaluating impactful engagements for the All of Us Research Program. Key highlights from the details provided elsewhere in this proposal: Genetic Science Learning Center (GSLC) at the University of Utah • Multi-talented team of 18 with a combination of science, education, science and health writing, visualization, and evaluation expertise • 20 years of experience in using community-based participatory design approaches to develop materials, including with underrepresented communities • Experts in making complex science—including genetics, genomics, and personalized medicine—understandable for non-experts, with a focus on grade 5-10, patients, the public, and providers • Award-winning, creative approaches to developing digital, experiential, and multicultural materials • Developers of Learn.Genetics and Teach.Genetics, the most highly used life-science education websites in the world • Rigorous evaluation methods used to assess the efficacy of and iteratively improve materials we develop • Passionate about our mission of making science and health easy for everyone to understand Community Partners Community Faces of Utah (CFU) • Equitable collaborative among leaders of 5 diverse community organizations, the Utah Department of Health, and the University of Utah, established in 2009; each community leader leads a network of other organizations • Committed to improving health in the African refugee/immigrant, African American, American Indian/Alaskan Native, Hispanic/Latino (Latinx), and Pacific Islander communities • Began with projects to develop educational materials and programs focused on genetics and health • Experienced in community-based, participatory design and co-creation of materials, programs, and research studies Equality Utah • Seeks to secure equal rights and protections for lesbian, gay, bisexual, transgender & queer Utahns and their families • Has collaborated with CFU, researchers and CCET in conducting research studies Community Collaboration & Engagement Team (CCET) of the Utah Center for Clinical & Translational Science (CCTS) • Sensitively facilitates academic-community partnerships; 10 years of experience • Skilled at building trusting relationships with community leaders, organizations and members • Supports multi-directional learning throughout projects • Has developed and maintains relationships at the local, state, regional and national levels with a strong focus on underrepresented groups Therapeutic Games and Apps Lab (GApp Lab), Entertainment Arts & Engineering Program (EAE), University of Utah (EAE) • One of the top game development programs in the world; BS and MS degrees • GApp Lab involves graduate students in developing health-related games and apps • Established collaboration between GSLC and EAE/GApp Lab for developing digital engagements

犹他州大学及其社区合作伙伴将带来经验和专业知识的结合，非常适合为我们所有的研究计划开发和评估有影响力的参与。本建议书其他地方提供的详细信息中的主要亮点： 犹他州大学遗传科学学习中心（GSLC） ·由18人组成的多才多艺的团队，结合了科学，教育，科学和健康写作，可视化， 评价专长 ·在使用基于社区的参与式设计方法开发材料方面有20年的经验，包括 代表性不足的社区 ·使复杂科学-包括遗传学，基因组学和个性化医学-为非专家所理解的专家，重点是5-10年级，患者，公众和提供者 ·屡获殊荣的创造性方法来开发数字，体验和多元文化材料 ·Learn.Genetics和Teach.Genetics的开发者，这是世界上使用率最高的生命科学教育网站 ·严格的评估方法，用于评估我们开发的材料的有效性并不断改进 ·了解我们的使命，让每个人都能轻松理解科学和健康 社区合作伙伴社区面孔犹他州（CFU） ·2009年成立的5个不同社区组织、犹他州卫生部和犹他州大学的领导人之间的公平合作;每个社区领导人领导其他组织的网络 ·致力于改善非洲难民/移民、非裔美国人、美洲印第安人/阿拉斯加原住民、西班牙裔/拉丁裔（拉丁裔）和太平洋岛民社区的健康状况 ·从开发以遗传学和健康为重点的教育材料和方案的项目开始 ·在社区为基础的经验，参与设计和共同创造的材料，方案，和研究平等犹他州 ·寻求为女同性恋、男同性恋、双性恋、变性人和同性恋者及其家人争取平等权利和保护 ·与CFU、研究人员和CCET合作进行研究 犹他州临床与转化科学中心（CCTS）的社区协作与参与团队（CCET） ·敏感地促进学术社区伙伴关系; 10年的经验 ·善于与社区领袖、组织和成员建立信任关系 ·支持整个项目的多方向学习 ·在地方、州、区域和国家各级发展和维护关系，重点是 治疗游戏和应用实验室（GApp Lab），娱乐艺术与工程项目（EAE），犹他州大学（EAE） ·世界顶级游戏开发项目之一; BS和MS学位 · GApp实验室让研究生参与开发与健康相关的游戏和应用程序 ·GSLC与EAE/GApp Lab建立合作关系，以开发数字化项目