Curation of the Seattle ALS Patient

摘要 数据共享允许将新的应用程序和假设应用于现有数据集，遵守 提供数据的个人，通常还有为生成数据的项目提供公共资金的个人。数据共享 对于肌萎缩侧索硬化症(ALS)等罕见疾病尤其重要。西雅图ALS 患者档案数据库(SALSPPD)是一个丰富的ALS患者(n=143)及其伴侣的纵向数据集 (配偶、重要的其他人或照顾者；n=123)，来自华盛顿州西雅图、加利福尼亚州旧金山；以及 宾夕法尼亚州费城这项研究的目的是描述心理和生理自然历史的特征 肌萎缩侧索硬化症及其之间的相互作用。参与者每3个月在家中接受一次访谈 至1987年3月至1989年8月期间的18个月。1990年、1994年完成了跟踪电话， 和2008年，主要是为了确定患者的预后。2009年，我们获得了这些数据的所有权， 使用，目的是使数据向公众开放。但是，数据不可用 形式。 这些是有价值的数据，包括关于患者特征的信息(例如，病史和家族史， 患者报告的结果、疾病结果、治疗)、伴侣特征(例如，伴侣报告的 结果)、家庭特征(例如，家庭结构)和疾病结果(例如，用力肺活量， 生存)。根据这一提议，将对数据进行格式化和验证(例如，变量名称和值， 值标签和语法)；有文件记录(数据字典、缺失数据分析、变量描述性统计)； 以及公开提供的数据和文件，并向科学家推广使用。分享 SALSPPD将为对ALS的自然历史、心理社会影响感兴趣的科学家提供丰富的资源 关于肌萎缩侧索硬化症的结果，反之亦然，以及治疗的心理社会和疾病结果。

SUMMARY Data sharing allows new applications and hypotheses to be applied to existing data sets, honoring the individuals who contributed data and, often, public funding of the project that generated the data. Data sharing is particularly important for uncommon diseases such as amyotrophic lateral sclerosis (ALS). The Seattle ALS Patient Profile Database (SALSPPD) is a rich longitudinal dataset of ALS patients (n = 143) and their partners (spouses, significant others, or caregivers; n = 123) from clinics in Seattle, WA; San Francisco, CA; and Philadelphia, PA. The purpose of the study was to characterize the psychological and physical natural history of ALS and the interactions between them. Participants were interviewed in their homes every 3 months for up to 18 months between March 1987 and August 1989. Follow-up phone calls were completed in 1990, 1994, and 2008, primarily to ascertain patient outcomes. In 2009, we were granted ownership of these data for our use, with the intention that the data would be made publicly available. However, the data are not in usable form. These are valuable data that include information on patient characteristics (e.g., medical and family history, patient-reported outcomes, disease outcomes, treatments), partner characteristics (e.g., partner-reported outcomes), family characteristics (e.g., family structure), and disease outcomes (e.g., forced vital capacity, survival). Under this proposal, the data would be formatted and validated (e.g., variable names and values, value labels and syntax); documented (data dictionary, missing data analysis, variable descriptive statistics); and the data and documentation made publicly available and their use promoted to scientists. Sharing the SALSPPD will provide a rich resource to scientists interested in the natural history of ALS, psychosocial effects on ALS outcomes and vice versa, and psychosocial and disease outcomes of treatments.