Engaging All of Us for Effective Precision Medicine

让我们所有人参与有效的精准医学

• 批准号: 9904066
• 负责人: LOUISA A STARK
• 金额: $ 168.05万
• 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/9904066
• 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; Imagery; 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; Writing; base; 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

犹他大学及其社区合作伙伴将带来丰富的经验和专业知识，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。从提供的细节的关键亮点 在此提案中的其他地方： 犹他大学的遗传科学学习中心（GSLC） •多才多艺的18个团队，结合了科学，教育，科学和健康写作，可视化和 评估专业知识 •使用基于社区的参与设计方法开发材料的20年经验，包括 有代表性不足的社区 •制作复杂科学的专家（包括遗传学，基因组学和个性化医学）可以理解 非专家，专注于5-10年级，患者，公众和提供者 •屡获殊荣，创造性的方法来开发数字，专家和多元文化材料 •学习的开发者。基因和教学。基因学，世界上最常用的生活科学教育网站 •用于评估我们开发的材料的有效性和迭代性的严格评估方法 •对我们使科学和健康的使命充满热情，让每个人都可以理解 社区合作伙伴 犹他州的社区面孔（CFU） •在5个潜水员社区组织，犹他州卫生部和 犹他大学，成立于2009年；每个社区领导者都领导着其他组织的网络 •致力于改善非洲难民/移民，非裔美国人，美洲印第安/阿拉斯加人的健康状况， 西班牙裔/拉丁裔（拉丁裔）和太平洋岛民社区 •始于开发针对遗传学和健康的教育材料和计划的项目 •在材料，计划和研究的基于社区的参与设计和共同创建方面经验丰富 犹他州平等 •试图确保对女同性恋，同性恋，双性恋，变性和酷儿及其家人的平等权利和保护 •已与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）的社区合作与参与团队（CCET） •灵敏的女主人学术社区伙伴关系； 10年的经验 •擅长与社区领导者，组织和成员建立信任关系 •支持整个项目的多向学习 •已经在地方，州，地区和国家层面建立和维持关系，重点是 代表性不足的群体 治疗游戏和应用实验室（GAPP实验室），娱乐艺术与工程计划（EAE），犹他大学（EAE） •世界上最重要的游戏开发计划之一； BS和MS学位 •GAPP实验室涉及研究生开发与健康相关的游戏和应用程序 •GSLC与EAE/GAPP实验室之间建立了合作，以开发数字参与