Enhancing Scientific Community Access to Add Health Data

增强科学界获取健康数据的机会

基本信息

批准号：
9296799
负责人：
ROBERT A HUMMER
金额：
$ 7.75万
依托单位：
UNIV OF NORTH CAROLINA CHAPEL HILL
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-03-23 至 2019-02-28
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9296799
关键词：
Address Adolescent Adult Archives Awareness Behavioral Biological Biomedical Research Child health care Collection Communities Custom Data Data Analyses Data Collection Data Discovery Data Quality Data Set Deposition Discipline Documentation Family Friendships Funding Future Genomics Health Home environment Human Human Development Individual International Interview Life Life Cycle Stages Link Longitudinal Studies Measures Metadata Methodology Methods Molecular National Institute of Child Health and Human Development Neighborhoods Peer Group Policies Politics Population Public Health Public Policy Readability Research Research Design Research Personnel Resources Schools Science Science Policy Specimen Structure Surveys Technology Thinking United States National Institutes of Health Update base built environment cohort data access data archive data portal database of Genotypes and Phenotypes design ethnic diversity genomic data health data innovation interest multidisciplinary phenotypic data public health research racial diversity repository response secondary analysis social tool web-based tool

项目摘要

ABSTRACT For more than 20 years, the National Longitudinal Study of Adolescent to Adult Health (Add Health), a nationally representative cohort of U.S. adolescents first contacted in 1994-95 who have now been followed into their fourth decade of life, has released all of its data to the scientific community. At present, Add Health has more than 30,000 users around the world across a range of scientific disciplines. Four waves of interviews have been conducted and a fifth wave is currently in the field. The comprehensive multilevel data includes survey responses, biological and genomic data, and social contextual data on friendship networks, romantic relationships, families, schools, neighborhoods, and the political, cultural, and built environment. Despite the widespread release and availability of Add Health data, updated documentation and metadata standards have not been applied to the rich longitudinal multilevel data. This application outlines a plan to substantially upgrade and expand the archiving, documentation, and dissemination of Add Health data. The intent is to make Add Health data even more easily accessible, straightforward to use, and clearly documented, while increasing awareness and facilitating expanded use of this national scientific resource. This project aims to: (1) enhance the archived Add Health data by applying the Data Documentation Initiative (DDI) international standard and harmonizing variables across the waves, thereby augmenting the information researchers can explore within the extensive collection of Add Health data; (2) generate searchable Add Health metadata in a human readable and machine-actionable format that will expand data discovery for the research community by providing researchers with robust web-based tools that facilitate the exploration of research questions that can be addressed with the Add Health data, generate customized codebooks that are unique to their research interests, and facilitate receipt of Add Health's public-use and restricted-use data; and (3) increase dissemination of Add Health data to the research community by depositing all waves of the Add Health public-use data in the NICHD Data and Specimen Hub, linking the metadata tool (described in Aim 2) to all repositories where Add Health's public-use data are deposited while integrating the new tools into the Carolina Population Center's Data Portal, and promoting researchers' awareness of the Add Health data and the data discovery tools. Add Health will be one of the first studies to apply DDI standards and provide metadata for multilevel social, behavioral, biological, genomic, and environmental data, contributing new innovations to the science behind DDI structure and methodology. Accomplishing the aims of this project will significantly expand the Add Health user base and multiply the scientific impact that Add Health has on social and biomedical research.

抽象的 20 多年来，国家青少年至成人健康纵向研究（Add Health） 1994-95 年首次接触的具有全国代表性的美国青少年群体，现已对其进行跟踪进入他们生命的第四个十年，已向科学界发布了所有数据。目前，添加健康在全球拥有超过 30,000 名用户，涵盖一系列科学学科。四波面试已经进行了第五波，目前正在实地进行。综合多层次数据包括调查回复、生物和基因组数据以及关于友谊网络、浪漫关系的社会背景数据关系、家庭、学校、社区以及政治、文化和建筑环境。尽管添加健康数据、更新的文档和元数据标准的广泛发布和可用性尚未应用于丰富的纵向多级数据。该申请概述了一项计划升级和扩展 Add Health 数据的归档、记录和传播。其目的是使添加健康数据更容易访问、使用简单且记录清晰，同时提高认识并促进扩大使用这一国家科学资源。该项目旨在：(1) 通过应用数据文档计划来增强已归档的 Add Health 数据 (DDI) 国际标准并协调各波变量，从而增强信息研究人员可以在广泛收集的 Add Health 数据中进行探索； (2)生成可搜索的Add 人类可读且机器可操作格式的健康元数据将扩展数据发现研究社区，为研究人员提供强大的基于网络的工具，促进探索研究可以通过添加健康数据解决的问题，生成定制的密码本其研究兴趣独特，并有助于接收 Add Health 的公共使用和限制使用数据；和 (3) 通过存储所有的 Add 数据波，增加 Add Health 数据向研究界的传播 NICHD 数据和样本中心中的卫生公共使用数据，将元数据工具（如目标 2 中所述）链接到 Add Health 公共使用数据存储的所有存储库，同时将新工具集成到卡罗莱纳州人口中心的数据门户，并提高研究人员对添加健康数据和数据发现工具。 Add Health 将成为首批应用 DDI 标准并为多层次社交、行为、生物、基因组和环境数据，为背后的科学贡献新的创新 DDI 结构和方法。实现该项目的目标将显着扩大 Add Health 用户群并倍增 Add Health 对社会和生物医学研究的科学影响。