Enhancing Scientific Community Access to Add Health Data

摘要 20多年来，国家青少年到成人健康纵向研究（Add Health）， 在1994 - 95年首次接触的美国青少年的全国代表性队列， 已经向科学界公布了所有的数据。目前，Add Health 在全球范围内拥有超过30，000名用户，涉及一系列科学学科。四波面试 第五波目前正在实地进行。全面的多级数据包括 调查响应，生物和基因组数据，以及友谊网络，浪漫网络， 人际关系、家庭、学校、邻里以及政治、文化和建筑环境。尽管 Add Health数据的广泛发布和可用性、更新的文档和元数据标准 没有被应用到丰富的纵向多层次数据。这份申请概述了一项计划， 升级和扩展Add Health数据的归档、文档编制和传播。目的是 使Add Health数据更易于访问、使用更直接、记录更清晰，同时 提高认识和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存档的AddHealth数据 (DDI)国际标准和协调各波变量，从而增加信息 研究人员可以在添加健康数据的广泛收集中进行探索;（2）生成可搜索的添加 健康元数据采用人类可读和机器可操作的格式， 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 可以使用Add Health数据解决的研究问题，生成自定义码本， 独特的研究兴趣，并促进Add Health的公共使用和限制使用数据的接收;以及 (3)通过存储Add的所有波，增加Add Health数据向研究社区的传播 NICHD数据和标本中心中的卫生公共使用数据，将元数据工具（目标2中所述）与 在将新工具集成到 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的认识， 数据发现工具。 添加健康将是首批应用DDI标准并为多层次社会提供元数据的研究之一， 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。实现这一项目的目标将大大扩大添加健康 用户群，并增加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.