A scientific resource for investigating the oldest-old: The 90+ Study data archive

 描述(由申请者提供)：该项目的目标是通过国家老龄化计算机化数据档案馆(NACDA)将90+研究数据库作为资源提供给更多的科学界。这项90岁以上的研究是最大规模的基于人群的研究之一，调查了年龄最大的90岁及以上人群的痴呆症和老龄化。这项研究于2003年启动，招募了近1600名参与者，并收集了丰富的纵向数据，包括人口统计数据、病史、药物和维生素使用情况、生活方式习惯、家族史、身体和神经检查、神经心理测试、身体和休闲活动、功能能力、辅助设备和死亡原因。数据收集于 休闲世界队列研究的1980-90年代关于几种生活方式、医疗史、药物和维生素使用的研究也适用于这些参与者。对于同意在死亡时进行脑部尸检的一部分参与者，存在神经病理学评估。我们建议创建不确定的数据集，并对在90多年的研究中收集的13年以上的数据进行自我解释的详细记录。我们将把这些资料提供给NACDA存档和分发，同时保护参与者的机密性。数据仅来自 已故的参与者将被包括在这项工作中。通过NACDA存档数据将确保所有数据都将得到保存，并在未来几年内轻松获得。研究团队由发起90+研究和休闲世界队列研究的研究人员组成，并负责研究的所有方面，包括概念、设计、评估选择、数据收集、统计分析和出版。他们是实施这一建议的理想人选，并坚定地致力于这些丰富的数据库的合作和共享。基于人口的大样本、参与者的极高年龄、频繁的评估、高保留率和广泛的信息使这些数据独一无二。存档的数据可用于研究与老年人健康相关的各种结果，包括但不限于痴呆症、残疾、虚弱和死亡率。我们预计，通过这项提议创造的科学资源将被研究人员用来探索新的科学假设，为新的拨款申请提供试点数据，将数据与其他最古老的研究结合起来，以获得更大的样本量，并补充NACDA中的其他纵向数据库，最终目标是促进关于这一未被研究的群体的科学知识。90+研究已经为我们最年长的个人的知识做出了巨大贡献，但公开这些数据将扩大其效用。考虑到我们社会的公共卫生负担 面对这一快速增长的群体，这种数据归档工作代表着一种经济高效的战略 促进有助于改善我们最年长公民健康的研究。

 DESCRIPTION (provided by applicant): The goal of this project is to make available The 90+ Study database as a resource to the greater scientific community through the National Archive of Computerized Data on Aging (NACDA). The 90+ Study is one of the largest population-based studies investigating dementia and aging in the oldest-old, people aged 90 and older. The study was initiated in 2003, enrolled nearly 1,600 participants, and has collected a wealth of longitudinal data including demographics, medical history, medication and vitamin use, lifestyle habits, family history, physical and neurological exams, neuropsychological tests, physical and leisure activities, functional abilities, assistive devices, and causes of death. Data collected in the 1980-1990s on several lifestyle practices, medial history, medication and vitamin use by the Leisure World Cohort Study are also available for these participants. Neuropathological evaluations exist for a subset of participants who agreed to brain autopsy upon death. We propose to create de-identified datasets and self-explanatory detailed documentation of the data collected throughout the 13+ years of The 90+ Study. We will supply these to NACDA for archiving and distribution while protecting the confidentiality of the participants. Data from only deceased participants will be included in this effort. Archiving data through NACDA will ensure that all data will be preserved and easily available for years to come. The research team consists of the investigators who initiated The 90+ Study and the Leisure World Cohort Study and have been responsible for all aspects of the studies including concept, design, choice of assessments, data collection, statistical analysis, and publications. They are the ideal people to undertake this proposal and are strongly committed to collaborations and sharing of these rich databases The large population-based sample, extreme old age of the participants, frequent evaluations, high retention rate, and wide variety of information make these data unique. The archived data can be used to study a variety of outcomes relevant to the health of the oldest-old including, but not limited to, dementia, disability, frailty, and mortality. We anticipate the scietific resource created through this proposal will be used by researchers to explore new scientific hypotheses, provide pilot data for new grant applications, combine data with other oldest-old studies for larger sample sizes, and complement other longitudinal databases in NACDA, with the ultimate goal of advancing the scientific knowledge about this understudied group The 90+ Study has already contributed greatly to the knowledge of our oldest individuals but public availability of these data will extend its utility. Given the public health burden that our society faces with this fast-growing group, this data archiving effort represents a cost-effective strategy to promote research that can help improve the health of our oldest citizens.