Continuation of Follow-up of DES-exposed Cohorts

在第1年期间，通过邮寄问卷调查（由NCI提供）继续随访Dieckmann和登记研究队列的存活成员，并对无应答者进行随访电话访谈。通过邮寄调查问卷并在第4年进行电话随访，继续对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。跟踪和验证收集的数据的完整性和准确性，并将数据提供给NCI指定的承包商进行集中提取、编码和数据录入。同意在这项工作中与其他参与者汇集未确定的数据。向NCI提供月度/季度/年度数据收集报告。在五年期间，邮寄两份通讯（由NCI提供）或信件给队列成员。参与编制、审查和评论合同期后的后续行动问题单和通讯。保持地址最新，并继续寻找丢失的队列成员。通过NDI Plus系统或获取死亡证明确定队列成员的死亡原因。通过与DES消费者团体合作，维护和扩大登记研究（CCA）队列。通过从登记患者中获取固定和新鲜组织来扩大现有组织库，并确定分子研究项目来研究这些稀有组织。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。合作编写汇总数据的手稿。如果提出并获得批准，则继续执行计划，以识别记录有DES暴露的其他个人，以纳入研究。

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.