Curation of the Seattle ALS Patient

西雅图 ALS 患者的治疗

基本信息

批准号：
10507809
负责人：
SUZANNE C. SEGERSTROM
金额：
$ 5.66万
依托单位：
UNIVERSITY OF KENTUCKY
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-08-01 至 2023-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10507809
关键词：
ALS patients Accidents Age Amyotrophic Lateral Sclerosis Biometry Caregivers Cessation of life Characteristics Child Clinic Code Consultations Data Data Analyses Data Set Databases Diagnosis Disease Disease Outcome Divorce Documentation Factor Analysis Family Family Characteristics Funding Grant Health Health behavior Heart Diseases Home Individual Infection Intention Interview Label Letters Malignant Neoplasms Marital Status Medical Mental Depression Muscular Dystrophies Names Natural History Operative Surgical Procedures Outcome Ownership Participant Patient Outcomes Assessments Patient-Focused Outcomes Patients Personality Pharmaceutical Preparations Philadelphia Physical therapy Psychology Recording of previous events Reporting Research Personnel Resources Respirators San Francisco Scientist Sclerosis Severities Site Social Interaction Spouses Structure Sum Symptoms Telephone Time Treatment outcome Treatment/Psychosocial Effects Visit Vital capacity Work alternative treatment coping data de-identification data dictionary data sharing demographics family structure file format follow-up indexing interest longitudinal dataset meetings nervous system disorder profiles in patients psychologic psychosocial residence search engine statistics syntax

项目摘要

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.

概括数据共享允许将新的应用程序和假设应用于现有数据集中，以表彰为生成数据的项目提供数据的个人以及经常贡献数据的个人资金。数据共享对于不常见的疾病，例如肌萎缩性侧索硬化症（ALS）尤其重要。西雅图ALS 患者概况数据库（SALSPPD）是ALS患者（n = 143）及其伴侣的丰富纵向数据集（配偶，重要的其他或看护人； n = 123）来自华盛顿州西雅图的诊所；加利福尼亚州旧金山；和宾夕法尼亚州费城。该研究的目的是表征心理和身体自然史 ALS及其之间的相互作用。参与者每3个月在他们的家中接受采访 1987年3月至1989年8月之间的18个月。后续电话于1990年，1994年完成和2008年，主要是为了确定患者预后。 2009年，我们被授予这些数据的所有权使用，目的是将数据公开可用。但是，数据不可用形式。这些是有价值的数据，包括有关患者特征的信息（例如，医学和家族史，患者报告的结果，疾病结果，治疗），伴侣特征（例如，伴侣报告结局），家庭特征（例如家庭结构）和疾病结果（例如，强迫生命能力，生存）。在此提案下，数据将得到格式和验证（例如，可变名称和值，价值标签和语法）;已记录（数据字典，缺少数据分析，可变描述性统计信息）；以及公开可用的数据和文档，并将其使用促进了科学家。分享 Salsppd将为对ALS自然历史感兴趣的科学家提供丰富的资源关于ALS的结果，反之亦然，以及治疗的社会心理和疾病结果。