Continuation of Follow-up of DES-exposed Cohorts

继续对 DES 暴露组进行随访

• 批准号: 7933088
• 负责人: ARTHUR HERBST
• 金额: $ 29.96万
• 依托单位: UNIVERSITY OF CHICAGO
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-09-30 至 2010-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7933088
• 关键词: Continuation; Follow; up; DES; exposed

Continue follow-up of the surviving members of the Dieckmann and Registry Cohorts with a mailed questionnaire survey (provided by NCI) and follow-up telephone interviews for non-responders during year 1. Continue follow-up of DES-granddaughters over age 18 through a questionnaire mailing with follow-up telephone interviews in year 4. Collect medical records, pathology reports, and tissue samples for disease outcomes of interest. Track and verify the completeness and accuracy of data collected, and provide the data to a contractor designated by NCI for central abstraction, coding and data entry. Agree to the pooling of non identified data with other participants in this effort. Provide monthly/quarterly/annual reports on data collection to NCI. Mail two newsletters (provided by NCI), or letters to cohort members during the five-year period. Participate in the development of and review and comment upon a questionnaire for follow-up beyond the contract period and a newsletter. Keep addresses up-to-date and continue tracing efforts for lost cohort members. Determine causes of death for cohort members through the NDI Plus system or acquisition of death certificates. Maintain and expand the Registry (CCA) Cohort by collaboration with DES Consumer Groups. Expand the existing tissue repository by obtaining fixed and fresh tissues from Registry patients, and identify molecular research projects to study these rare tissues. Participate in Steering Committee meetings and conference calls to discuss study progress and to review and comment upon analyses from study data. Collaborate in the preparation of manuscripts from the pooled data. Pursue plans, if proposed and approved, for the identification of additional individuals with documented DES exposure for inclusion in the study.

通过邮寄问卷调查（由NCI提供）继续对Dieckmann和Registry队列的幸存成员进行随访，并在第1年对无应答者进行随访电话访谈。通过邮寄问卷和第4年的后续电话访谈，继续对年龄在18岁以上的des孙女进行随访。收集医疗记录、病理报告和组织样本，以获得感兴趣的疾病结果。跟踪和验证所收集数据的完整性和准确性，并将数据提供给NCI指定的承包商进行中心抽象、编码和数据输入。同意在此工作中与其他参与者共享未识别数据。向NCI提供月度/季度/年度数据收集报告。邮寄两份通讯（由NCI提供），或在五年期间给队列成员写信。参与调查问卷的开发，审查和评论，以便在合同期限后跟进和通讯。保持地址的更新，并继续努力寻找丢失的队列成员。通过NDI Plus系统或获得死亡证明确定队列成员的死亡原因。通过与DES消费者小组的合作，维护和扩大注册中心（CCA）队列。通过从注册患者获得固定和新鲜组织来扩展现有组织库，并确定分子研究项目来研究这些罕见组织。参加指导委员会会议和电话会议，讨论研究进展，并对研究数据的分析进行审查和评论。从汇集的数据中合作准备稿件。如果提出并获得批准，继续制定计划，以确定有DES暴露记录的其他个体，以便纳入研究。