Dementia in Swedish Twins Data Archiving

描述(由申请人提供)：本申请中描述的工作的目的是存档瑞典双胞胎痴呆症研究的数据，该研究由NIH Grant No.R01 AG08724，与密歇根大学的大学间政治和社会研究联盟(ICPSR)合作。档案中将包括R01 AG08724为瑞典收养/双胞胎老龄化研究(SATSA)人口成员提供的14年资助数据。这些数据将补充SATSA已通过ICPSR存档的数据。瑞典双胞胎数据档案中建议的痴呆症将包括多次进行的认知筛查结果，对有认知障碍证据的双胞胎及其双胞胎兄弟姐妹进行的痴呆症诊断评估结果，包括在痴呆症评估中的认知测试分数，其中一人或两人患有痴呆症的双胞胎对的纵向认知测试分数，病史和医疗风险因素，以及生活方式和行为风险因素。总体而言，SATSA人群中的1075人，包括330个完整的配对，参与了由瑞典双胞胎痴呆症研究资助的一项或多项评估。881个人的认知筛查结果是可用的。在研究过程中，368名先证者和双胞胎兄弟姐妹被分配了一致的临床诊断；其中185人被诊断为痴呆症。归档需要将复杂的调查和临床数据转换为具有用户友好格式的受控访问公共使用文件，以促进数据使用。本申请中描述的活动包括格式化数据集和创建符合ICPSR标准的文档。直接标识已经删除；在准备数据文件存档的过程中，我们将进一步取消数据的标识，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单独使用这一资源，并通过将具有类似信息的不同研究的数据汇集在一起来利用这一资源。公共卫生相关性：美国国立卫生研究院鼓励数据存档，作为一种向研究界尽可能广泛和免费提供数据的方式，同时保护参与者的机密性。那些参与最初研究的人的动机是为了解老年人认知能力下降的来源做出贡献。存档服务于这些参与者的愿望和公共卫生利益，允许最充分地利用所收集的信息。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，以提高在老年保持认知健康的可能性。

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.