follow-up DATA COLLECTION

The Sister Study and Two Sister Study will follow-up with each woman for at least ten years. After the initial activities are completed, participants are asked to keep us updated on changes to their contact information and health status each year. Participants are asked to complete the Annual Health Update even if there are no changes to report.

Women in the Sister Study are asked to complete detailed Follow-up Questionnaires beginning two to three years after initial enrollment. These more detailed forms track changes in women’s health, lifestyles, and exposures over the course of the study. They up also provide an opportunity to collect new data to evaluate emerging hypotheses and in-depth information to update a special topic of interest.

Information on incident cancer and other conditions is collected via the Annual Health Updates, the detailed Follow-ups, and through telephone calls, e-mails, or correspondence with the study helpdesk. As women in the cohort develop conditions of interest, we seek medical records or physician verification and pathological details (with the consent of the participating woman) to complement self-reported data.

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

Annual Health Update Forms

Abbre- viation	Title	Description
HU	Annual Health Update	Includes a brief series of questions about changes in the participant’s health since she last reported on major health conditions
--	Contact Information Update	Allows participants to review the information on file and make any changes; also used with Biennial and Triennial Follow-ups

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

First Detailed Follow-Up Questionnaires

Abbre- viation	Title	Description
H	Health and Medical History	Asks about a wide variety of conditions, symptoms, surgeries, procedures and medications; the questionnaire covers these major topics: General Health Family Medical History Personal Medical History Medical Symptoms Breast Health Reproductive History and Hormones Surgeries Medications
L	Lifestyle	Covers these major topics: Demographics and Household Information Smoking and Exposure to Smoke Alcohol Use Physical Activity and Hobbies Personal Care Products, Sun Exposure Residential History Work History
S	Special Topic: Stress and Coping	Covers these major topics: General Reactions to Stress Personal Experience with Traumatic Events General Fears and Feelings of Safety Unfair Treatment Based on Race/Ethnicity Unfair Treatment Based on Sexual Orientation Unfair Treatment at Work Work-Related Stress

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

Second Detailed Follow-Up Questionnaires

Abbre- viation	Title	Description
H	Health and Medical History	Asks about a wide variety of conditions, symptoms, surgeries, procedures and medications; the questionnaire covers these major topics: General Health Family Medical History Personal Medical History Medical Symptoms Breast Health Menstrual History Reproductive History and Hormones Symptoms of Menopause or Pre‐Menopause Surgeries Medication
L	Lifestyle	Covers these major topics: Demographics and Household Information Smoking and Exposure to Smoke Alcohol Use Physical Activity and Hobbies Personal Care Products, Sun Exposure Residential History Work History
T	Special Topic: Quality of Life and Special Topics	Covers these major topics: General Reactions to Stress Perception of Overall Health and Stress Aging Sleep Restless Leg Syndrome Supplements and Alternative Practices Diet, Weight Loss Procedures, and Food Allergies Dietary Screener Questionnaire (DSQ)

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

Breast Cancer Follow-Up Forms

Abbre- viation	Title	Description
--	Breast Cancer Follow-Up Form Questionnaire	Approximately six months after the reported date of diagnosis, women are asked to complete a self-administered form by mail or respond by telephone (CATI).
CA	Diagnosis and Treatment of Breast Cancer	This section of the participant questionnaire covers these major topics: Verification of reported diagnosis information Lymph nodes and metastases Characteristics of the breast cancer tumor(s) Treatment (surgery, chemotherapy, radiation therapy, other treatments and clinical trial participation)
MRF	Breast Cancer Medical Report Form	Used by record abstraction staff to record data read from medical records received from breast cancer cases and their health care providers

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

Other Cancer Validation Forms

Abbre- viation	Title	Description
OX	Other Cancer Validation Abstraction Form	Used by record abstraction staff to record data read from pathology reports received from other cancer cases and their health care providers

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.

Special Questionnaires

Abbre- viation	Title	Description
CDC	Special Survey	Included questions about participants’ experiences having a sister who had breast cancer and their beliefs about breast cancer; it was sent with the 2011 Annual Update and only to participants who had never been diagnosed with breast cancer

 

Actual questionnaires can be accessed through the Sister Study Tracking and Review System (STaRS) website.