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:
- 金额:$ 5.66万
- 依托单位:
- 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:
- 关键词:ALS patientsAccidentsAgeAmyotrophic Lateral SclerosisBiometryCaregiversCessation of lifeCharacteristicsChildClinicCodeConsultationsDataData AnalysesData SetDatabasesDiagnosisDiseaseDisease OutcomeDivorceDocumentationFactor AnalysisFamilyFamily CharacteristicsFundingGrantHealthHealth behaviorHeart DiseasesHomeIndividualInfectionIntentionInterviewLabelLettersMalignant NeoplasmsMarital StatusMedicalMental DepressionMuscular DystrophiesNamesNatural HistoryOperative Surgical ProceduresOutcomeOwnershipParticipantPatient Outcomes AssessmentsPatient-Focused OutcomesPatientsPersonalityPharmaceutical PreparationsPhiladelphiaPhysical therapyPsychologyRecording of previous eventsReportingResearch PersonnelResourcesRespiratorsSan FranciscoScientistSclerosisSeveritiesSiteSocial InteractionSpousesStructureSumSymptomsTelephoneTimeTreatment outcomeTreatment/Psychosocial EffectsVisitVital capacityWorkalternative treatmentcopingdata de-identificationdata dictionarydata sharingdemographicsfamily structurefile formatfollow-upindexinginterestlongitudinal datasetmeetingsnervous system disorderprofiles in patientspsychologicpsychosocialresidencesearch enginestatisticssyntax
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.
总结
数据共享允许将新的应用和假设应用于现有的数据集,
贡献数据的个人,以及通常为产生数据的项目提供的公共资金。数据共享
对于肌萎缩性侧索硬化症(ALS)等不常见疾病尤为重要。西雅图ALS
患者档案数据库(SALSPPD)是ALS患者(n = 143)及其伴侣的丰富纵向数据集
(配偶、重要他人或照顾者; n = 123)来自华盛顿州西雅图、加利福尼亚州弗朗西斯科的诊所;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的自然史
以及它们之间的相互作用。参与者每3个月在家中接受一次采访,
从1987年3月到1989年8月的18个月。1990年、1994年,
2008年,主要是为了确定病人的结果。2009年,我们获得了这些数据的所有权,
使用,目的是使数据公开。然而,这些数据是不可用的
form.
这些都是有价值的数据,其中包括有关患者特征的信息(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,伙伴报告
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,数据将被格式化和验证(例如,变量名和值,
值标签和语法);记录(数据字典、缺失数据分析、变量描述性统计);
向公众提供数据和文件,并向科学家推广使用这些数据和文件。共享
SALSPPD将为对ALS的自然史,心理社会影响,
ALS的结果,反之亦然,以及治疗的心理和疾病结果。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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SUZANNE C. SEGERSTROM其他文献
SUZANNE C. SEGERSTROM的其他文献
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{{ truncateString('SUZANNE C. SEGERSTROM', 18)}}的其他基金
Self-Regulation and Aging: Substrates and Health Consequences
自我调节和衰老:基质和健康后果
- 批准号:
8189506 - 财政年份:2012
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation and Aging: Substrates and Health Consequences
自我调节和衰老:基质和健康后果
- 批准号:
8644776 - 财政年份:2012
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation and Aging: Substrates and Health Consequences
自我调节和衰老:基质和健康后果
- 批准号:
9024396 - 财政年份:2012
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation and Aging: Substrates and Health Consequences
自我调节和衰老:基质和健康后果
- 批准号:
8442835 - 财政年份:2012
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation and Aging: Substrates and Health Consequences
自我调节和衰老:基质和健康后果
- 批准号:
8808726 - 财政年份:2012
- 资助金额:
$ 5.66万 - 项目类别:
Repetitive Thought, Stress, and Immunity in Older Adults
老年人的重复思维、压力和免疫力
- 批准号:
7806563 - 财政年份:2006
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation, Immunological Aging, and Health in Older Adults
老年人的自我调节、免疫衰老和健康
- 批准号:
9061536 - 财政年份:2006
- 资助金额:
$ 5.66万 - 项目类别:
Repetitive Thought, Stress, and Immunity in Older Adults
老年人的重复思维、压力和免疫力
- 批准号:
7091189 - 财政年份:2006
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation and Brain and Cognitive Health in Older Adults
老年人的自我调节与大脑和认知健康
- 批准号:
9383979 - 财政年份:2006
- 资助金额:
$ 5.66万 - 项目类别:
Self-Regulation, Immunological Aging, and Health in Older Adults
老年人的自我调节、免疫衰老和健康
- 批准号:
8705330 - 财政年份:2006
- 资助金额:
$ 5.66万 - 项目类别:
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