Follow-up

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The Sister Study and Two Sister Study will follow-up with each participant for at least ten years. After baseline enrollment activities were completed, participants were asked to keep the study updated on changes to their contact information.

Yearly, participants receive the Annual Health Update form that requests updates on any new diagnoses within the past year. Participants are asked to complete the Annual Health Update even if there are no changes to report. Participants may also complete an Anytime Update to report changes in between scheduled updates. See follow-up schedule.

Beginning two to three years after enrollment and at similar intervals thereafter, participants are asked to complete Follow-Up Questionnaires that cover more detailed changes in the women’s health, lifestyle, and exposures over the course of the study. They also provide an opportunity to collect new data to evaluate emerging hypotheses and special topics of interest, for example quality of life or stress and coping.

Information on incident cancer and other conditions is collected via Annual Health Updates, detailed follow-up questionnaires, and through telephone calls, e-mail, and other correspondence with Sister Study staff. Approximately 6 months after a reported diagnosis of breast cancer, women complete a Breast Cancer Follow-Up questionnaire. As women in the cohort develop conditions of interest, the Sister Study seeks medical records or physician verification and pathology details (with participants’ consent) to complement self-reported data.

Linkages to state cancer registries, the National Death Index, and the Social Security Death Index will be performed for participants who are lost to follow-up or refuse medical record authorization, to provide as much information as possible regarding incident cancers, tumor characteristics, treatment and vital status.