Follow-Up Data Collection
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:
|
L | Lifestyle |
Covers these major topics:
|
S | Special Topic: Stress and Coping |
Covers these major topics:
|
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:
|
L | Lifestyle |
Covers these major topics:
|
T | Special Topic: Quality of Life and Special Topics |
Covers these major topics:
|
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:
|
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.