Enhancing Scientific Community Access to Add Health Data

摘要 20多年来，全国青少年至成人健康纵向研究(Add Health)，a 1994-95年首次接触的具有全国代表性的美国青少年队列，现在已被跟踪 进入他们生命的第四个十年，已经向科学界公布了所有数据。目前，添加健康 在世界各地拥有超过3万名用户，涉及一系列科学学科。四波采访 已经开展了工作，目前正在实地开展第五波工作。综合多层次数据包括 关于友谊网络的调查答复、生物和基因组数据以及社会背景数据，浪漫 关系、家庭、学校、社区，以及政治、文化和建筑环境。尽管 广泛发布和提供Add Health Data、更新的文档和元数据标准 不适用于丰富的纵向多水平数据。这份申请概述了一项计划，实质上 升级和扩展Add Health Data的归档、记录和传播。其目的是为了 使添加健康数据更容易访问、使用更直接、文档更清晰，同时 提高对这一国家科学资源的认识并促进其扩大使用。 该项目旨在：(1)通过应用数据文件倡议，加强已存档的新增健康数据 (DDI)国际标准和协调各波变量，从而增加信息 研究人员可以在ADD Health数据的广泛集合中进行探索；(2)生成可搜索的ADD 采用人类可读和机器可操作的格式的健康元数据，将扩展对 通过为研究人员提供强大的基于Web的工具来促进对 可以通过添加健康数据解决的研究问题，生成符合以下条件的定制代码簿 对他们的研究兴趣是独特的，并便于接收Add Health的公共使用和限制使用数据；以及 (3)通过存放ADD的所有浪潮，增加ADD健康数据向研究界的传播 NICHD数据和标本中心的卫生公共使用数据，将元数据工具(目标2所述)与 存储Add Health公共使用数据的所有存储库，同时将新工具集成到 卡罗莱纳人口中心的数据门户，并促进研究人员对添加健康数据和 数据发现工具。 Add Health将是首批应用DDI标准并为多层次社会、 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极大地扩展Add Health 用户基础和成倍增加Add Health对社会和生物医学研究的科学影响。

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.