Development of Foundational Collaborations and Capabilities to Advance Exposome Research in Childhood-onset Rheumatic Diseases and other Pediatric Autoimmune Conditions

发展基础合作和能力，推进儿童期风湿病和其他儿童自身免疫性疾病的暴露组研究

• 批准号: 10868992
• 负责人: MARC DAVID NATTER
• 金额: $ 48.68万
• 依托单位: BOSTON CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-20 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10868992
• 关键词: Academic Medical Centers; Address; Adolescent; Adult; Affect; Air; Area; Arthritis; Autoimmune Diseases; Autoimmunity; Boston; Case Report Form; Catalogs; Categories; Censuses; Child; Childhood; Chronic Childhood Arthritis; Chronic Disease; Clinical Data; Clinical Research; Collaborations; Collection; Data; Data Collection; Data Set; Data Sources; Databases; Development; Disease; Elements; Engineering; Enrollment; Environmental Exposure; Female; Funding; Future; Genome; Genomics; Genotype; Goals; Individual; Informed Consent; Infrastructure; Juvenile Dermatomyositis; Life Cycle Stages; Link; Localized scleroderma; Longevity; Medical center; Medicine; Mixed Connective Tissue Disease; Morbidity - disease rate; National Center for Advancing Translational Sciences; National Institute of Environmental Health Sciences; North America; Outcome Measure; Patient Outcomes Assessments; Patient Representative; Patients; Pediatric Hospitals; Pediatric Research; Pediatric cohort; Pediatrics; Phenotype; Policies; Population; Protocols documentation; Registries; Reporting; Research; Research Activity; Research Infrastructure; Research Personnel; Resources; Rheumatism; Rheumatology; Risk Factors; Role; Site; Sjogren' s Syndrome; Socioeconomic Status; Specimen; Standardization; Surveys; System; Systemic Lupus Erythematosus; Systemic Scleroderma; Technology; Testing; Translational Research; United States National Academy of Sciences; United States National Institutes of Health; Vision; biobank; cohort; data warehouse; demographics; disease registry; genome resource; genomic data; interest; multidisciplinary; novel strategies; phenotypic data; recruit; research study; rheumatologist; sex; social health determinants; treatment response; water quality

PROJECT SUMMARY The primary vision of this project is the establishment of investigator and network collaborations that will advance study of the role of the exposome in childhood-onset rheumatic diseases and other autoimmune conditions, with an overarching goal of creating new research resources and forming new teams of pediatric investigators from existing networks that can contribute to the nascent “EXposome in Autoimmune Disease Collaborating Teams” (EXACT) network. The recent National Academies of Science, Engineering and Medicine report “Enhancing NIH Research on Autoimmune Disease” (2022), which identified “gap areas” in contemporary research efforts of autoimmune diseases that the EXACT-PLAN Notice of Special Interest addresses, specifically endorses a life-course approach that includes a focus on children and adolescents. We seek to address this focus via collaboration between two existing pediatric networks with extensive existing phenotype and biobank resources: the investigator-sponsored Childhood Arthritis and Rheumatology Research Alliance (CARRA), which sponsors the CARRA Registry, and the NIH/NCATS funded Genomic Information Commons (GIC). The CARRA Registry has enrolled >13,000 subjects from >70 sites, with nearly 1,900 biobanked specimens, and is the largest longitudinal chronic disease registry for childhood-onset rheumatic diseases in North America, with clinical data collection and biobanking in 4 disease categories: Juvenile Idiopathic Arthritis, Systemic Lupus Erythematosus/Mixed Connective Tissue Disease/Sjogren’s Syndrome, Juvenile Dermatomyositis, and Localized and Systemic Scleroderma. The GIC network is a cooperative, phenotype-genotype biobanking effort with 8 participating pediatric academic medical centers across the US, with broad representation of subjects with differing conditions (13.7 million subjects, ~30,000 with genome- linked phenotypic data, 160,000 biospecimens collected) and provides search across sites to identify cohorts of individuals with and without rheumatic or autoimmune diseases, with infrastructure also supporting subject recruitment and biobanking for future studies. Our aims for this project are two-fold: (1) Establish a collaborative framework between investigators of the CARRA and GIC networks for augmenting current research activities with exposome data and biobank specimens; and (2) pilot the linkage of publicly available exposome data sets, including air and water quality databases, to existing data sets that the CARRA Registry and GIC maintain. We will develop and adapt policies, protocols, informed consents, case report forms, and patient surveys that are specifically targeted to incorporating exposome data for childhood-onset rheumatic diseases and other autoimmune conditions. Our multi-disciplinary project team includes researchers in pediatric rheumatology and the exposome, technology experts, and patient representatives. Completion of the aims of this project will enable new team-based collaborations to conduct future high-quality, best-practices exposome research for many pediatric autoimmune diseases as part of the future EXACT network.

项目摘要 该项目的主要愿景是建立调查员和网络合作，将 提前研究暴露在儿童期风湿病和其他自身免疫性中的作用 条件，其总体目标是创建新的研究资源并组成新的小儿团队 现有网络的调查人员可能会导致新生的“自身免疫性疾病的杂物” 合作团队”（精确）网络。最近的国家科学，工程学院和 医学报告“增强对自身免疫性疾病的NIH研究”（2022年），该研究确定 当代自身免疫性疾病的当代研究工作是精确计划特别关注的通知 地址，特别认可了一种生活方式方法，其中包括关注儿童和青少年。我们 寻求通过两个现有的儿科网络之间的合作来解决这一重点 表型和生物库资源：研究者赞助的儿童关节炎和风湿病研究 赞助CARRA注册中心的联盟（CARRA），NIH/NCAT资助的基因组信息 下议院（GIC）。 CARRA注册中心已从> 70个地点招收> 13,000名受试者，近1,900个地点 生物领域的标本，是儿童发病的最大纵向慢性疾病登记处 北美的疾病，有4种疾病的临床数据收集和生物群：少年 特发性关节炎，全身性红斑狼疮/混合结缔组织疾病/Sjogren综合征， 少年皮肤瘤炎，以及局部和全身性硬皮病。 GIC网络是合作社， 表型基因型生物群体努力与美国8个参与的儿科学术医疗中心， 具有不同条件不同的受试者的广泛表示（1,370万受试者，约30,000个基因组 - 链接的表型数据，收集了160,000个生物测量），并提供跨站点的搜索以识别同伙 基础设施也支持主题 招募和生物群以进行未来的研究。我们对该项目的目标是两个方面：（1）建立一个 CARRA和GIC网络调查员之间的协作框架，用于增强电流 带有暴露数据和生物库标本的研究活动； （2）驾驶公开可用的链接 与CARRA注册表的现有数据集在内的外向数据集（包括空气和水质数据库） 和GIC保持。我们将制定和调整政策，协议，知情同意，案件报告表和 专门针对符合儿童发作性风湿性的外界数据的患者调查 疾病和其他自身免疫性状况。我们的多学科项目团队包括 小儿风湿病学和外博，技术专家和患者代表。完成 该项目的目标将使新的基于团队的合作能够进行未来的高质量，最佳实践 作为未来精确网络的一部分，许多儿科自身免疫性疾病的外界研究。