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The Sister Study

I'm leaving a legacy of health for women to come.

FAQs

About the Study

Study Participation

Study Follow-Up Activities

Privacy & Confidentiality

Find Out More

 

Was your question answered? Go to our Ask a Question page.

What is the Sister Study all about?

The Sister Study is the only long-term study in the United States and Puerto Rico of women ages 35 to 74 whose sisters had breast cancer. This important study is conducted by the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health. The study will follow 50,000 women for at least 10 years to learn how environment and genes may affect the chances of getting breast cancer.


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What will the Sister Study tell us?

Researchers believe the Sister Study will help us better understand reasons women get breast cancer, especially reasons that concern environment and genes. Results from the Sister Study may also help us understand reasons women get other diseases such as heart disease and other types of cancer. Knowledge gained from the Sister Study will be used to develop recommendations for preventing breast cancer in the future and promoting good health for women.


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Who is running the study?

Researchers at the National Institute of Environmental Health Sciences (NIEHS) are running the study. NIEHS is one of the National Institutes of Health, part of the U.S. Department of Health and Human Services.

The Investigators are —

Dale P. Sandler, PhD
Chief of Epidemiology Branch

Clarice Weinberg, PhD
Chief of Biostatistics Branch

Learn more about the Investigators leading the study by visiting Who is Leading the Study.


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Why is it important for me to continue to help the Sister Study?

Breast cancer is a serious disease that will affect 1 in 8 women in the US over their lifetimes. We believe the Sister Study will give us valuable information about the different reasons women get breast cancer. This information may help us learn about ways to prevent breast cancer. Everyone’s life experiences are different although women from all walks of life may have common experiences that increase their chances of developing breast cancer. It is important that women from all backgrounds participate for the full length of the study so that the results of the study will apply to everyone.

 

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Is the research only about breast cancer?

No. We will study risk factors for other diseases, such as coronary heart disease, osteoporosis, and certain other types of cancers. These are important health concerns for women. Large cohort studies such as the Sister Study are very expensive. By using the data to study other diseases that might also be influenced by the environment, we can increase the value of the study and make good use of the important information you have shared.

 

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How have other organizations like ACS, Komen, Y-Me, and the Sisters Network provided support for the Sister Study?

The American Cancer Society, Sisters Network, Inc., Susan G. Komen for the Cure, and Y-Me provided support for the Sister Study by using their own resources and/or opportunities to encourage women to participate. All of these organizations share the Sister Study’s interest in learning how environment, lifestyle, and genes may make some women more likely to develop breast cancer than others. Our supporters are well-respected advocates of breast cancer research and women’s health. 

 

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To what organizations will you provide information learned from the Sister Study and how will the information provided be used to benefit public health?

The information collected in the Sister Study will be used to identify risk factors that may increase the chances of developing breast cancer. The results will be reported in papers that will be published in scientific literature, including journals read by physicians, epidemiologists, and laboratory scientists. Results will also be reported in the national and regional press, and to the participants in newsletters and on the website. Published summary reports from the Sister Study will also be available to government and other organizations that make decisions about evidence that specific agents cause cancer or other diseases and to those who make policy recommendations. Also, these reports will be available to other investigators who may wish to test ways to prevent disease.

 

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Why study sisters of women who have had breast cancer?

Studies have shown that sisters of women with breast cancer have about double the risk of developing breast cancer themselves compared to women who do not have a first degree relative (a sister, for example) with breast cancer. Sisters may share many of the same genes and risk factors. By studying sisters, we will have a greater chance of identifying those risk factors.


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How can I make a donation to the Sister Study?

The Sister Study, conducted by the National Institute of Environmental Sciences (NIEHS) is funded from Congressional appropriations, is not a fund-raising organization, and does not solicit, suggest or request donations from outside sources.

However the US Congress has authorized the NIEHS to accept unsolicited donations and bequests to support the mission of the study. Donations to the Sister Study are deposited in a separate Gift Fund account, and are used to help keep our 50,000+ Sisters engaged and informed during the life of the study, and also to support young scientists who work with the Sister Study.

There are some rules we must follow when we accept a donation:

  1. Checks must be made payable to the “NIEHS” or "National Institute of Environmental Health Sciences.". Please indicate “Sister Study” on the Memo/For line of the check.

  2. The donation letter must be addressed to our Institute Director, who will place the gift in a dedicated account for use by the Sister Study.
    Sample Letter (Requires Adobe Acrobat - Download Here) exit disclaimer
    Here is a sample letter that would be sufficient for this purpose — if it is agreeable to you, you may simply print it, complete it and return it along with your check in an envelope addressed to the following:

         Linda Birnbaum, PhD DABT ATS
         Director
         NIEHS
         National Institutes of Health
         PO Box 12233
         Research Triangle Park, NC  27709

  3. After your donation is received, the Institute Director will send you a note to thank you once again. Also for your tax records, the EIN number for NIH/NIEHS is 152085811501.

  4. If you have further questions regarding your donation, please contact Paula Juras (919-541-3478 or juras@niehs.nih.gov). If you have general questions about the Sister Study, please call toll-free 877-4SISTER (877-474-7837).

For general information about donations to NIEHS, please visit—

http://www.niehs.nih.gov/about/community/donations/index.cfm


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How long will the study last?

Participants will be followed for at least 10 years.


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Who makes sure this study is safe and scientifically sound?

Research funded by the federal government is carefully reviewed and monitored. First, the Institutional Review Board (IRB) of the NIEHS reviews the study, identifying issues and concerns, and works with the investigators as needed to improve the study. The NIEHS IRB is diverse and includes ethicists, lawyers, physicians, scientists from NIEHS, as well as scientists and members from the local community. The investigators and staff who are conducting the Sister Study receive ongoing education and monitoring to ensure that these requirements are fulfilled. If you would like more information on this important topic, please visit the NIH website at http://www.hhs.gov/ohrp/ exit disclaimer


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What if I change my mind after I've signed up to participate?

You are free to withdraw from the Sister Study at any time. If you change your mind, please call toll-free at 877-4SISTER (877-474-7837) and follow directions for enrolled participants.


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What happens if I am diagnosed with breast cancer while I'm in the study?

We want to know about this as soon as possible. If you have received the Annual Health Update you can use it to update your health status. Or, if you like, you can e-mail the Sister Study at update@sisterstudy.org or complete the Anytime Update e-mail form on our website. However, be mindful that we cannot protect your personal information via this email format therefore if you would like to contact us about information that is sensitive in nature, we encourage you instead to call us toll-free at 877-4SISTER (877-474-7837) and follow directions for enrolled participants. When we learn that you have been diagnosed with breast cancer, a member of our staff will contact you to ask you some questions about your diagnosis and treatment. We will also want to obtain information from your doctors and medical record. We will do this ONLY WITH YOUR PERMISSION AT THAT TIME.


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Can I still be in the study if I develop breast cancer?

YES. We also want to learn if environmental, lifestyle, and genetic factors influence treatment outcomes, survival, and quality of life following breast cancer diagnosis. It will be important for us to follow all women, including those who develop breast cancer, for the full length of the study.


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What happens if I am diagnosed with some other illness while I'm in the study?

We want to know about important changes in your health when they occur. If you have received the Annual Health Update you can use it to update your health status. Or, if you like, you can e-mail the Sister Study at update@sisterstudy.org or complete the Anytime Update e-mail form on our website. However, be mindful that we cannot protect your personal information via this email format therefore if you would like to contact us about information that is sensitive in nature, we encourage you instead to call us toll-free at 877-4SISTER (877-474-7837) and follow directions for enrolled participants. We are especially interested in other forms of cancer and diseases that are important for women, such as heart disease, thyroid disease, diabetes, osteoporosis, and autoimmune diseases like lupus. If you report that you have been diagnosed with one of these conditions, a member of our staff may contact you to ask you some questions about your diagnosis and treatment. We may also want to obtain information from your doctors and medical record. Of course we will do this ONLY WITH YOUR PERMISSION AT THAT TIME.


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What is the "Annual Health Update"?

Every year, we will send you an Annual Health Update that you can use to record major changes in your health status (for example, a diagnosis of breast cancer, heart attack, etc.). We ask you to return it even if there have not been any changes to your health. If you develop any medical conditions, you may also let us know by calling us toll-free at 877-4SISTER (877-474-7837) and following the directions for enrolled participants.


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What is the purpose of the follow-up questionnaires? Why do I have to give you more information? How often will I have to do this?

We will ask you to complete follow-up questionnaires every two to three years. The follow-up questionnaires or interview will let us update your health status in more detail than we can with the Annual Health Updates. The follow-up questionnaires will also allow us to ask questions that will address any new theories about breast cancer that may arise.


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What happens if I move or change my phone number or e-mail address while I'm in the study?

We want you to let us know about changes in your address, phone number, or e-mail address as soon as possible. You may use the Contact Information Update Forms we send you each year. Or, if you like, you can e-mail the Sister Study at update@sisterstudy.org or complete the Anytime Update e-mail form on our website. However, be mindful that we cannot protect your personal information via this email format therefore if you would like to contact us about information that is sensitive in nature, we encourage you instead to call us toll-free at 877-4SISTER (877-474-7837) and follow directions for enrolled participants.


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How will I get the results of the study?

It is important to us that you learn results from this study as soon as possible. We will send you regular newsletters with highlights of study results. Results of the study will be published in scientific journals. A list of published article and links can be found on the Published Articles page of this website.


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Can I get the results of my blood test?

No. Most of the tests we will do are for research purposes only. They are not intended to be used as diagnostic tests or to make decisions about your medical care. Furthermore, we will not do all tests for all participants in the study and it may be many years before we test your blood. ;Some of the tests are very expensive and it is efficient to do them only on blood samples from women who develop breast cancer and a small percentage of the women who don’t. In order to get valid answers, for many tests, we plan to wait until women in the study have been followed for at least 5 years.


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Can I get any results from the study?

We will let you know what we learn by combining the results of tests from many women. We hope that our analyses will provide information that can be used to help women prevent breast cancer and we will make sure to share that information with you.

If, in the course of testing blood samples from many women in the study, we learn something that, in our judgment, is especially important to tell individual participants, we will work with our Institutional Review Board (the committee responsible for overseeing the quality of our research and the safety of research participants) to determine the best way to inform participants.

On a regular basis, we will send you newsletters with highlights of general study results. Results of the study will be published in scientific journals. A list of these published articles and links can be found on the Published Articles page of our website.


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Will my information be kept confidential? How will this be done?

All of the Sister Study staff sign confidentiality forms and undergo training in research ethics. We have put in place several protections for the privacy of your data. When your data are collected, they are labeled with an ID number. After your data are collected, your samples, questionnaires, and interview data are stored separately from all personal identifiers, such as your name, address, and telephone number. Your personal contact information is kept in separate files accessible only to Sister Study staff.

The Sister Study has received a Certificate of Confidentiality that helps us protect the confidentiality of your data against compulsory legal demands (e.g., court orders and subpoenas) that seek the name or other identifying characteristics of a research subject. With a Certificate of Confidentiality, researchers cannot be forced by anyone to give out information that could identify you.


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What will you do with all of my information?

We will compare the data provided by study participants who develop breast cancer with data from participants who do not. This will help us understand what is different about the two groups, and what the likely risk factors are for breast cancer.


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Will my insurance company or employer obtain the information I give you as part of the study?

No, we will not provide any study information to insurance companies or employers, as it is strictly protected by confidentiality rules. However, this does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research should you choose to do so on your own.


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Will I have to provide any medical records?

It depends. If you are diagnosed with breast cancer or other major illnesses while you are still participating in the study, we will ask you to give us written permission to seek more information about your diagnosis and treatment from your doctor and from your medical record. At that time, you can agree to give us permission or not.


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Why do you need details from my medical records?

Risk factors may differ for breast cancer with specific features or even by tumor location in the breast. The best source of accurate information on specific breast cancer features is the medical record.


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How can I learn more and have my questions answered about the Sister Study?

Please call toll-free at 877-4SISTER (877-474-7837), and follow instructions for enrolled participants. Or, if you like, you can e-mail the Sister Study at info@sisterstudy.org or go to the Ask a Question email form on our website and a Sister Study helpdesk staff member will answer your questions. However, be mindful that we cannot protect your personal information via this email format therefore if you would like to ask about something that is sensitive in nature, we encourage you instead to call us toll-free at 877-4SISTER (877-474-7837) and follow directions for enrolled participants.


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Where can I find out more about breast cancer risk factors, diagnosis, and treatment?

Here are some breast cancer resources, including some with experts available to answer your specific questions.

Please go to our Resources page for a list of breast cancer resources.


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