National Institute of Environmental Health Sciences   —  National Institutes of Health   —  U.S. Department of Health and Human Services

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 and Fourth Detailed Follow-Up Questionnaires, 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. Beginning with the Fifth Detailed Follow-Up Questionnaire, the reproductive history section was removed, and only a single version was administered to all participants regardless of age.

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. Women who report selected noncancerous conditions are also asked for permission to obtain medical records pertaining to that condition. Examples include cardiovascular and cerebrovascular conditions and Parkinsonís disease. For a list of medically validated conditions click here.

Updated information on family history of key cancers (breast, ovarian, pancreatic and prostate) as well as genetic testing was collected via a cohort-wide, stand-alone Family Health Update questionnaire launched in 2017. In addition, data on family history events and genetic testing were collected from sporadic participant-initiated reports via telephone calls, e-mails, and correspondence with the Sister Study Helpdesk. As with other detailed questionnaires, near the end of the field period an abbreviated version of the family history questionnaire was made available to the small number of women unable or unwilling to complete the full questionnaire.

In response to the COVID-19 pandemic, details on COVID-19 diagnoses and the pandemic impact on participantsí lives were collected via a stand-alone, cohort-wide COVID-19 questionnaire launched in 2020. An abbreviated version of the COVID-19 questionnaire was also made available to the small number of participants unwilling or unavailable to complete the full questionnaire. In addition to the COVID-19 questionnaire, a limited set of COVID-19 diagnosis questions were added to the Annual Health Update and Fifth Detailed Follow-Up questionnaires. Specifically, both the Annual Health Update for 2020 and the Fifth Detailed Follow-up (2020 version) included questions about COVID-19 infection length, testing, and hospitalization. The Annual Health Update for 2021 and Fifth Detailed Follow-up (2021 version) added questions about symptoms and vaccination history. COVID-19 diagnoses were also collected sporadically through participant-initiated phone calls, e-mails, or other correspondence with the Sister Study Help Desk.

Additional information on outcome data collection can be found at:

All 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.

Abbre-
viation
Title Description
HU

Annual Health Update (PDF 521 KB)


Annual Health Update Archive

Includes a brief series of questions about changes in the participantís health since she last reported on major health conditions, 2021 version.

Previous versions of the Annual Health Update questionnaire

--

Contact Information Update (PDF 313 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

The first detailed follow-up was administered from 2008-2012. 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
  • Cigarette Smoking and Household 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 385 KB)

Covers these major topics:

  • General Reactions to Stress
  • Depression Screener
  • Personal Experience with Traumatic Events
  • General Fears and Feelings of Safety
  • Unfair Treatment/Discrimination Based on Race/Ethnicity or Sexual Orientation
  • Unfair Treatment at Work
  • Work-Related Stress

 

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Second Detailed Follow-Up Questionnaires

The second detailed follow-up was administered from 2012-2014. 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 2859 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 393 KB)

Covers these major topics:

  • Demographics and Household Information
  • Cigarette Smoking and Household Exposure to Smoke
  • Alcohol Use
  • Physical Activity and Hobbies
  • Personal Care Products, Sun Exposure
  • Residential History
  • Occupational History
T

Quality of Life and Special Topics
(PDF 651 KB)

Cereal Card
(PDF 25 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

The third detailed follow-up was administered from 2014-2016. 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 2889 KB)

Health and Medical History B (PDF 543 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 477 KB)

Covers these major topics:

  • Demographics and Household Information
  • Cigarette Smoking and Household Exposure to Smoke
  • E-Cigarette Use
  • 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
  • Social/Emotional Support
  • Depression and Anxiety Screeners
  • Personal Experience with Traumatic Events
  • Changes in Cognition
  • Sleep
  • Dietary Supplements and Alternative Health Practices
  • Special Diets and Weight Loss Procedures

 

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Fourth Detailed Follow-Up Questionnaires

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

The fourth detailed follow-up was administered from 2017-2019. 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
HL

Health, Medical History, and Lifestyle A 
(PDF 3280 KB)

Health, Medical History, and Lifestyle B
(PDF 790 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
  • Fear of Falling (Version B only)
  • Medical Symptoms
  • Breast Health
  • Menstrual History (reduced in Version B)
  • Reproductive History and Hormone Use (reduced in Version B)
  • Surgeries
  • Medication(s) (Prescription and
    Non-Prescription)
  • Demographics and Household Information
  • Cigarette Smoking and Passive Exposure to Smoke
  • E-Cigarette Use
  • Alcohol Use
  • Coffee, Tea, and Soft Drink Consumption
  • Physical Activity
  • Personal Care Products
  • Sun Exposure
  • Residential History
  • Residential Pesticide Exposure
  • Occupational History
  • Perception of Overall Health and Stress
  • Depression Screener
  • Personal Experience with Traumatic Events
  • Changes in Cognition
  • Sleep

 

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Fifth Detailed Follow-Up Questionnaires

The fifth detailed follow-up was administered from 2020-2022, which included COVID-19 questions. A second version was created in 2021 to capture additional information about COVID-19 symptoms and vaccinations. Links to the questionnaire can be found in the table below.

Abbre-
viation
Title Description
HL

Health, Medical History, and Lifestyle (2020) 
(PDF 1485 KB)

Health, Medical History, and Lifestyle (2021)
(PDF 3915 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
  • Cancer/Other Diagnosis Treatments
  • Medical Symptoms
  • Breast Health
  • Menstrual History
  • Hormone Use
  • Surgeries
  • Dietary Supplements
  • Medication(s) (Prescription and
    Non-Prescription)
  • Demographics and Household Information
  • Cigarette Smoking and E-Cigarette Use
  • Marijuana and CBD Use
  • Alcohol Use
  • Physical Activity
  • Special Diets
  • Personal Care Products
  • Sun Exposure
  • Occupational History
  • Perception of Overall Health and Stress
  • Depression Screener
  • Unfair Treatment/Discrimination
  • Changes in Cognition
  • Sleep
  • Residential History
  • COVID-19 Infection Length, Testing, and Hospitalization
  • COVID-19 Symptoms and Vaccine (2021 Version only)

 

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Family Health Update Questionnaires

A link to the Family Health Update Questionnaire Version A is below. This was designed for participants with no more than 8 sisters, 5 brothers, 3 sons, and 3 daughters. An expanded version (Version B) was sent to participants with larger families. The abbreviated version of the Family Health Update Questionnaire was sent to participants unable or reluctant to complete the full questionnaire. The Family Health Update Questionnaire was administered from 2017-2018. Links to questionnaires can be found in the table below.

Abbre-
viation
Title Description
FH

Family Health Update 
(PDF 1267 KB)

Abbreviated
Family Health Update

(PDF 1971 KB)

Asks about family medical history and genetic testing; the questionnaire covers these major topics:

  • Cancer diagnoses for family members (breast, ovarian, prostate, pancreatic cancers) and age at diagnosis
  • Participant genetic testing
  • Family member genetic testing

 

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COVID-19 Questionnaires

The COVID-19 questionnaire was administered from 2020-2021. The abbreviated version of the questionnaire was sent to participants unable or reluctant to complete the full questionnaire. Links to the full and abbreviated COVID-19 Questionnaires can be found in the table below.

Abbre-
viation
Title Description
CO

COVID-19 Questionnaire 
(PDF 1129 KB)

Abbreviated
COVID-19 Questionnaire

(PDF 845 KB)

The questionnaire covers these major topics:

  • COVID-19 Infection Length, Symptoms, and Hospitalization
  • COVID-19 Treatments
  • COVID-19 Testing - Active Infection and Antibody Tests
  • Access to Medical Care (reduced in Abbreviated Version)
  • Activities, Physical Distancing & Masks/Face Coverings (reduced in Abbreviated Version)
  • Finances and Insurance (reduced in Abbreviated Version)
  • Housing and Household Demographics (reduced in Abbreviated Version)
  • Travel (Full Version only)
  • Lifestyle Changes (reduced in Abbreviated Version)
  • Overall Pandemic Impact
  • Impact of Other National Current Events on Stress (Full Version only)

 

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