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. Each Detailed Follow-Up Questionnaire is administered over multiple years, shifting the reference date based on when the questionnaire was administered. An example of the each questionnaire can be found in the links below.
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 Parkinson's 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 participants' 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:
Questionnaires for periodic follow-ups can be accessed through the links below.
(Requires Adobe Acrobat - Download Here) 
- Annual Health Update Forms
- First Detailed Follow-Up Questionnaires
- Second Detailed Follow-Up Questionnaires
- Third Detailed Follow-Up Questionnaires
- Fourth Detailed Follow-Up Questionnaires
- Fifth Detailed Follow-Up Questionnaires
- Family Health Update Questionnaires
- COVID-19 Questionnaires
Annual Health Update Forms
Links to questionnaires can be found in the table below.
|
Abbre- viation |
Title | Description |
|---|---|---|
| HU |
Annual Health Update (PDF 594 KB) |
Includes a brief series of questions about changes in the participant's health since she last reported on major health conditions, 2022 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 |
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:
|
| L | Lifestyle (PDF 95 KB) |
Covers these major topics:
|
| S | Special Topic: Stress and Coping (PDF 385 KB) |
Covers these major topics:
|
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:
|
| L | Lifestyle (PDF 393 KB) |
Covers these major topics:
|
| T |
Quality of Life and Special Topics |
Covers these major topics:
|
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.
|
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:
|
| L | Lifestyle and Quality of Life (PDF 477 KB) |
Covers these major topics:
|
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.
|
Abbre- viation |
Title | Description |
|---|---|---|
| HL |
Health, Medical History, and Lifestyle A
Health, Medical History, and Lifestyle B |
Asks about a wide variety of conditions, symptoms, surgeries, procedures and medications; the questionnaire covers these major topics:
|
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)
Health, Medical History, and Lifestyle (2021) |
Asks about a wide variety of conditions, symptoms, surgeries, procedures and medications; the questionnaire covers these major topics:
|
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
Abbreviated |
Asks about family medical history and genetic testing; the questionnaire covers these major topics:
|
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
Abbreviated |
The questionnaire covers these major topics:
|
|