Dementia in Swedish Twins Data Archiving

瑞典双胞胎的痴呆症数据存档

• 批准号: 7529966
• 负责人: Margaret Gatz
• 金额: $ 7.17万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-08-01 至 2010-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7529966
• 关键词: Address; Adoption; Age; Aging; Agreement; Archives; Behavioral; Boston; California; Clinical Data; Cognitive; Collaborations; Communities; Complement; Complex; Confidentiality; Consensus; Data; Data Analyses; Data Collection; Data Files; Data Set; Dementia; Deposition; Diagnosis; Diagnostic; Documentation; Elderly; Evaluation; Florida; Funding; Funding Opportunities; Grant; Health; Health behavior; Impaired cognition; Individual; Institutes; Knowledge; Life Style; Medical; Medical History; Meta-Analysis; Michigan; Mission; NIH Program Announcements; Numbers; Outcome; Participant; Phase; Population; Population Research; Probability; Process; Public Health; Purpose; Range; Registries; Research; Research Personnel; Resources; Risk; Risk Factors; Sample Size; Score; Screening Result; Screening procedure; Siblings; Social Behavior; Source; Standards of Weights and Measures; Surveys; Telephone; Testing; Time; Twin Multiple Birth; Twin Studies; United States National Institutes of Health; Universities; Veterans; West Virginia; Work; World War II; aging population; base; clinical Diagnosis; college; computerized; cost; experience; improved; interest; member; proband; ranpirnase; social; tool; user-friendly

DESCRIPTION (provided by applicant): The purpose of the work described in this application is to archive data from the Study of Dementia in Swedish Twins, funded by NIH Grant No. R01 AG08724, with the Inter-University Consortium for Political and Social Research (ICPSR) at the University of Michigan. Included in the archive will be data from fourteen years of funding by R01 AG08724 for all twins who were members of the Swedish Adoption/Twin Study of Aging (SATSA) population. These data will complement data already archived with ICPSR from SATSA. The proposed Dementia in Swedish Twins data archive will comprise results of cognitive screening that took place at multiple times, results of diagnostic evaluations for dementia for twins who showed evidence of cognitive impairment and for their twin siblings, scores on cognitive tests included in the dementia evaluation, longitudinal cognitive test scores for twin pairs in which one or both was demented, medical history and medical risk factors, and lifestyle and behavioral risk factors. In all, 1075 individuals in the SATSA population, including 330 complete pairs, participated in one or more of the assessments funded by the Study of Dementia in Swedish Twins. Cognitive screening results are available for 881 individuals. Over the course of the study, 368 individuals both probands and twin siblings were assigned consensus clinical diagnoses; of these, 185 were diagnosed as demented. Archiving entails converting the complex survey and clinical data into controlled access public use files with user-friendly formats that facilitate data use. The activities described in this application include formatting datasets and creating documentation consistent with ICPSR standards. Direct identifiers are already removed; in the course of preparing data files for archiving, we will further deidentify the data to protect the confidentiality of participants. Data archiving serves the purpose of enabling other investigators to make use of this resource, both by itself, and through pooling data across different studies with similar information. PUBLIC HEALTH RELEVANCE: Data archiving is encouraged by NIH as a way to make data as widely and freely available as possible to the research community while safeguarding the confidentiality of participants. Those participating in the original studies were motivated to contribute to knowledge about sources of cognitive decline in older adults. Archiving serves the aspirations of those participants and the interests of public health by permitting the fullest possible use of the information that was collected. The research question that can be addressed by those using the data archive is of intense public interest, namely, discovering potentially modifiable lifestyle factors and health behaviors that improve the probability for maintaining cognitive health in old age.

描述（由申请人提供）：本申请中描述的工作目的是存档由NIH资助的瑞典双胞胎痴呆症研究的数据。R01 AG08724，密歇根大学校际政治与社会研究联盟（ICPSR）。档案中包括R01 AG08724对瑞典收养/双胞胎老龄化研究（SATSA）人口中所有双胞胎的14年资助数据。这些数据将补充SATSA ICPSR已经存档的数据。拟议的瑞典双胞胎痴呆症数据档案将包括多次进行的认知筛查结果、表现出认知障碍证据的双胞胎及其双胞胎兄弟姐妹的痴呆症诊断评估结果、痴呆症评估中包括的认知测试分数、其中一方或双方患有痴呆症的双胞胎的纵向认知测试分数、病史和医疗风险因素、生活方式和行为风险因素。总共有1075名SATSA人群，包括330对完整的夫妇，参加了由瑞典双胞胎痴呆症研究资助的一项或多项评估。共有881人获得了认知筛查结果。在研究过程中，368名先证和双胞胎兄弟姐妹被分配了一致的临床诊断；其中，185人被诊断为精神错乱。存档需要将复杂的调查和临床数据转换为便于数据使用的用户友好格式的可控访问公共使用文件。本应用程序中描述的活动包括格式化数据集和创建与ICPSR标准一致的文档。直接标识符已被删除；在准备数据文件存档的过程中，我们将进一步对数据进行识别，以保护参与者的机密性。数据存档的目的是使其他研究人员能够利用这一资源，既可以单独使用，也可以通过汇集不同研究中具有相似信息的数据。公共卫生相关性：NIH鼓励数据存档，作为一种使数据尽可能广泛和免费地提供给研究界的方法，同时保护参与者的机密性。那些参与最初研究的人被激励去了解老年人认知能力下降的原因。通过允许尽可能充分地利用所收集的信息，存档服务于这些参与者的愿望和公共卫生的利益。那些使用数据档案的人可以解决的研究问题具有强烈的公共利益，即发现潜在的可改变的生活方式因素和健康行为，这些因素和健康行为可以提高保持老年认知健康的可能性。