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The Sister Study

follow-up DATA COLLECTION

After the baseline activities were completed, participants in the Sister Study and the Two Sister Study were asked to keep us updated on changes to their contact information and health status each year via the Annual Health Updates or Detailed Follow-Up Questionnaires. Even if there are no changes to report, participants are asked to complete an Annual Health Update for any year in which they are not asked to complete a Detailed Follow-Up Questionnaire. Participants are also provided the opportunity to keep us updated on changes to their contact information and health status in between follow-ups via the Sister Study Help Desk (phone or email).

Women in the Sister Study are asked to complete Detailed Follow-Up Questionnaires beginning two to three years after completion of baseline activities. These more detailed forms track changes in women’s health, lifestyles, and exposures over the course of the study. They also provide an opportunity to collect new data to evaluate emerging hypotheses and any in-depth information to initiate or update a special topic of interest. For the Third Detailed Follow-Up Questionnaire, participant burden was reduced by offering an alternate version for participants older than 60 years of age (Version B), which included fewer questions on menstrual and reproductive history.

Information on incident cancer and other health conditions (outcomes) is collected via Annual Health Updates, Detailed Follow-Up Questionnaires, and through telephone calls, e-mails, or correspondence with the Sister Study Helpdesk. Women reporting breast cancer are asked to complete a Breast Cancer Follow-Up Form (BCFF), which assesses diagnosis and treatment details. In addition, they are asked for permission to request their medical records and pathology reports pertaining to their breast cancer diagnosis from their health care providers. Women reporting other (non-breast) cancers are asked for pathology reports and/or permission to request pathology reports from their providers. Additional information on outcome data collection can be found at:

Breast Cancer     • Other Cancers      • Other Outcomes

Questionnaires for periodic follow-ups can be accessed through the links below.
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Annual Health Update Forms

Links to questionnaires can be found in the table below. We are currently in the process of making these documents Section 508 compliant. If you need assistance before then please click here to contact us.

Abbre-
viation
Title Description
HU

Annual Health Update(PDF 182 KB)

Includes a brief series of questions about changes in the participant’s health since she last reported on major health conditions

--

Contact Information Update (PDF 559 KB)

Allows participants to review the information on file and make any changes; also used with Detailed Follow-Ups

 

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First Detailed Follow-Up Questionnaires

Links to questionnaires can be found in the table below. We are currently in the process of making these documents Section 508 compliant. If you need assistance before then please click here to contact us.

Abbre-
viation
Title Description
H

Health and Medical History (PDF 195 KB)

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
  • Medication(s) (Prescription and Non-Prescription)
L

Lifestyle (PDF 95 KB)

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
  • Occupational History
S

Special Topic: Stress and Coping (PDF 6899 KB)

Covers these major topics:

  • General Reactions to Stress
  • Depression Screener
  • 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

 

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Second Detailed Follow-Up Questionnaires

Links to questionnaires can be found in the table below. We are currently in the process of making these documents Section 508 compliant. If you need assistance before then please click here to contact us.

Abbre-
viation
Title Description
H

Health and Medical History (PDF 7447 KB)

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(s) (Prescription and Non-Prescription)
L

Lifestyle (PDF 3474 KB)

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

Quality of Life and Special Topics
(PDF 5724 KB)

Cereal Card
(PDF 952 KB)

Covers these major topics:

  • Perception of Overall Health and Stress
  • Depression Screener
  • Personal Experience with Traumatic Events
  • Social/Emotional Support
  • Changes in Cognition
  • Sleep
  • Restless Leg Syndrome
  • Dietary Supplements and Alternative Practices
  • Special Diets and Weight Loss Procedures
  •  Food Allergies
  • Dietary Screener Questionnaire (DSQ)

 

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Third Detailed Follow-Up Questionnaires

Health and Medical Version A: Participants < 60.0 years of age
Health and Medical Version B: Participants > 60.0 years of age

Links to questionnaires can be found in the table below. We are currently in the process of making these documents Section 508 compliant. If you need assistance before then please click here to contact us.

Abbre-
viation
Title Description
H

Health and Medical History A (PDF 6972 KB)

Health and Medical History B (PDF 5708 KB)

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 (reduced in Version B)
  • Reproductive History and Hormone Use (reduced in Version B)
  • Symptoms of Menopause or Pre‐Menopause
  • Surgeries
  • Medication(s) (Prescription and Non-Prescription)
L

Lifestyle and Quality of Life (PDF 4283 KB)

Covers these major topics:

  • Demographics and Household Information
  • Smoking and Exposure to Smoke
  • Alcohol Use
  • Coffee, Tea, and Soft Drink Consumption
  • Physical Activity and Hobbies
  • Personal Care Products
  • Sun Exposure
  • Residential History
  • Occupational History
  • Perception of Overall Health and Stress
  • Personal Experience with Traumatic Events
  • Social/Emotional Support
  • Changes in Cognition
  • Sleep
  • Dietary Supplements and Alternative Health Practices
  • Special Diets and Weight Loss Procedures

 

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