Continuation of Follow-up of DES-exposed Cohorts

点击翻译按钮获取中文摘要

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.