Engagement Optimization Unit

参与度优化单元

• 批准号: 10237263
• 负责人: JENNIFER W MACK
• 金额: $ 47.12万
• 依托单位: BROAD INSTITUTE, INC.
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-01 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10237263
• 关键词: Address; Adolescent; Adolescent and Young Adult; Adult; Age; Area; Behavioral Research; Behavioral Sciences; Blood; Blood specimen; Caring; Child; Childhood; Clinical; Clinical Data; Clinical Research; Clinical Trials; Communication; Communities; Computational Biology; Computer Analysis; Consent; Country; Dana-Farber Cancer Institute; Data; Data Reporting; Data Science; Databases; Decentralization; Development; Diagnostic Procedure; Disease; Economics; Enrollment; Ensure; Failure; Feedback; Future; Genome; Genomics; Goals; Hemangiosarcoma; Institutes; Intervention; Intervention Trial; Knowledge; Leadership; Literature; Malignant Neoplasms; Medical Records; Metastatic Prostate Cancer; Metastatic breast cancer; Minority; Molecular; Morbidity - disease rate; Outcome; Participant; Patient Recruitments; Patient-Focused Outcomes; Patients; Phase; Population; Population Heterogeneity; Prevention strategy; Process; Protocols documentation; Rare Diseases; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Research; Rural Minority; Saliva; Site; Smooth Muscle; Specimen; Survival Rate; Testing; Time; Tissue Sample; Translating; Translational Research; Translations; Tumor Tissue; Underrepresented Populations; United States; Work; anticancer research; bone; cancer clinical trial; clinical database; cohesion; data archive; data de-identification; efficacy trial; ethnic minority population; experience; genomic data; improved; leiomyosarcoma; literacy; member; novel; osteosarcoma; outreach; participant enrollment; patient engagement; racial and ethnic; racial minority; rare cancer; recruit; rural area; rural dwellers; saliva sample; sarcoma; shared database; social; success; targeted treatment; treatment strategy; tumor; tumor DNA; web site; young adult

Osteosarcoma (OS) and leiomyosarcoma (LMS) are exceedingly rare cancers, both subtypes of sarcoma, that arise in bone and smooth muscle respectively. There has been a failure to improve survival rates or decrease treatment-related morbidity in OS/LMS due to insufficient characterization of the genomic landscape, resulting in a lack of targeted therapeutic approaches, diagnostic methods, and preventive strategies. There is an urgent need for a large, shared database of clinical and genomic data in OS and LMS. Yet, because of the rarity of these tumor types as well as other challenges in patient recruitment and the genomic characterization of these tumors, to date it has been difficult to generate this data. The overarching goal of this proposal is to engage adult and pediatric participants with OS and LMS as partners to generate a shared database of clinical, genomic, molecular, and patient-reported data. This should accelerate discoveries that drive novel treatment strategies, new clinical trials, and new standards of care. The Count Me In PE-CGS U2C Research Center will leverage our experience in patient engagement, genome characterization, computational analysis, and behavioral research to create and launch two patient-partnered projects to generate this clinicogenomic data. We will build two websites with patients in the OS and LMS communities—the Osteosarcoma Project (OSproject) and the Leiomyosarcoma Project (LMSproject)—and consent 3,000 patients over the course of the study. We will collect medical records, patient-reported data, archival tumor tissue samples, and saliva and blood for genomic analysis. We will generate clinically annotated genomic data from at least 750 tumor specimens, 500 circulating tumor DNA specimens, and corresponding germline specimens and share the de-identified data widely. At the same time, we will study and optimize the approach to patient engagement in cancer research, particularly among rural and minority participants and participants across a range of literacy levels, ages, and stages in development. To accomplish these goals, we will build on a well-established interdisciplinary team from the Broad Institute and Dana-Farber Cancer Institute with members who have pioneered these approaches. Our leadership (Wagle, Janeway) and Units are comprised of experts in patient-partnered cancer research (Wagle, Painter), sarcoma clinical and translational research (Janeway, George, Crompton, Raut), genome characterization, analysis, and clinical interpretation (Gabriel, Getz, Van Allen, Wagle, Janeway), computational biology/data science (Getz, Van Allen, Philippakis), and behavioral science (Mack, Rebbeck). Our Center will uncover the key clinicogenomic features of OS/LMS, integrate them into a single comprehensive database with a goal of accelerating research and improving the lives of these patients. In doing so, we also aim to present a general approach to patient-partnered research that can be disseminated broadly and applied to other tumors types and patient communities.

骨肉瘤（OS）和平滑肌肉瘤（LMS）都是极少数癌症，都是肉瘤的亚型， 这分别在骨骼和平滑肌中产生。未能提高生存率或降低 由于基因组景观的表征不足，OS/LMS治疗相关的发病率 缺乏有针对性的治疗方法，诊断方法和预防策略。有紧急 需要OS和LMS中临床和基因组数据的大量共享数据库。但是，由于很少见 这些肿瘤类型以及患者招募的其他挑战以及这些肿瘤的基因组表征 肿瘤迄今为止很难生成此数据。该提议的总体目标是参与 成人和儿科参与者与OS和LMS作为合作伙伴，生成共享的临床数据库， 基因组，分子和患者报告的数据。这应该加快推动新颖治疗的发现 策略，新的临床试验和新的护理标准。我在PE-CGS U2C研究中心的伯爵将 利用我们在患者参与，基因组表征，计算分析和 行为研究以创建和启动两个患者合作的项目，以生成这种临床基因组 数据。我们将在OS和LMS社区中与患者建立两个网站 - 骨肉瘤项目 （Osproject）和平滑肌肉瘤项目（LMSProject），并同意3,000名患者 学习。我们将收集病历，患者报告的数据，档案肿瘤组织样本以及唾液和血液 用于基因组分析。我们将产生至少750个肿瘤标本的临床注释的基因组数据， 500个循环肿瘤DNA标本和相应的种系标本并共享去识别的数据 广泛。同时，我们将研究并优化患者参与癌症研究的方法， 特别是在各个识字水平，年龄和 开发阶段。为了实现这些目标，我们将建立在一个公认的跨学科团队的基础上 Broad Institute和Dana-Farber Cancer Institute与已开创了这些方法的成员。我们的 领导力（Wagle，Janeway）和单位是累积患者合作癌症研究专家（Wagle，Wagle， 画家），肉瘤临床和翻译研究（Janeway，George，Crompton，Raut），基因组 表征，分析和临床解释（Gabriel，Getz，Van Allen，Wagle，Janeway）， 计算生物学/数据科学（Getz，Van Allen，Philippakis）和行为科学（Mack，Rebbeck）。 我们的中心将揭示OS/LMS的关键临床结构组特征，将它们集成到一个综合 数据库的目标是加速研究并改善这些患者的生活。这样，我们也 旨在提出一种可以广泛传播并应用的患者合作研究的一般方法 到其他肿瘤类型和患者社区。