Frequently Asked Questions
- What is the Sister Study all about?
- What will the Sister Study tell us?
- Why is it important for me to help the Sister Study?
- How can I help the Sister Study?
- Who can join the Sister Study?
- Why aren't you studying women who have breast cancer?
- Why can't women who are younger than 35 or older than 74 join the Sister Study?
- What will you ask me to do if I join the Sister Study?
- Will my information be kept private and confidential?
- Are there any physical risks to me if I join the Sister Study?
- Will it cost me anything if I join the Sister Study?
- Will I get paid if I join the Sister Study?
- Will I get my own results from the medical information I give the Sister Study?
- How will I find out about results from the Sister Study?
- Will my blood be used for genetic (DNA) testing?
- How do I reach a Sister Study staff member to get more information?
What is the Sister Study all about?
The Sister Study is the only long-term study in the United States of women aged 35 to 74 who have sisters with breast cancer. This important study is funded by the National Institute of Environmental Health Sciences ( NIEHS ). The study will follow 50,000 women for at least 10 years and will collect information about genes, lifestyle and environmental factors that may cause breast cancer.
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 genes and the environment. Results from the Sister Study may also help us understand reasons women get other diseases such as heart disease and other types of cancer.
Why is it important for me to help the Sister Study?
Breast cancer is a serious disease that will affect 1 in 8 women in the U.S. 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.
How can I help the Sister Study?
There are 3 ways you can help the Sister Study:
- Join the Sister Study if you are eligible .
- Spread the word by telling other women to find out if they can join the Sister Study.
- Become a Sister Study volunteer and help us make sure that all the women in your community know about the Sister Study.
Who can join the Sister Study?
You can join the Sister Study if you:
- are a woman living in the US
- have never had breast cancer
- are 35 to 74 years old, and
- have a sister related to you by blood who has had breast cancer.
Why aren't you studying women who have breast cancer?
The Sister Study collects information about genes and environmental exposures. This information is collected before a woman's body has been changed by breast cancer, its treatment, or changes she might make in her lifestyle after being told she has breast cancer. Researchers will be able to compare this information between women who do and do not get breast cancer in the future. By collecting this information before a woman develops breast cancer, researchers can better discover factors that may cause breast cancer.
Why can't women who are younger than 35 or older than 74 join the Sister Study?
While we would like to include sisters of all ages in the study, we must look at the age group of women that can best help us find answers about breast cancer. Women under the age of 35 are less likely to get breast cancer than those 35 or older, while women over 74 are more difficult to follow for ten or more years because of health and lifestyle changes. If you are not between the ages of 35 and 74, you can still help the Sister Study by spreading the word or becoming a volunteer!
What will you ask me to do if I join the Sister Study?
If you join the Sister Study, we will ask you to:
- give us samples of your blood, toenails, urine, and house dust,
- answer questions about your family history, jobs, diet, medical history, and environmental surroundings,
- and stay in touch with us for the full length of the study.
For a complete list of everything you will be asked to do, click here .
Will my information be kept private and confidential?
Yes. All information you give will be kept private and confidential. The Sister Study will not share information that identifies you with others.
Are there any physical risks to me if I join the Sister Study?
The risks to you are very small. The most common may be bruising or swelling or light headedness after you have your blood taken.
Will it cost me anything if I join the Sister Study?
You do not have to pay any money to participate in the Sister Study. The only cost to you will be the time it takes you to complete the different study activities .
Will I get paid if I join the Sister Study?
You will not receive any money for participating in the Sister Study.
Will I get my own results from the samples and medical information I give the Sister Study?
The tests we will conduct are for research purposes only. You will not be told about your own results because we will not know how to interpret a single woman's results in terms of risks or benefits. We will provide a summary of information about your diet, body mass index, blood pressure, and urine glucose.
How will I find out about results from the Sister Study?
You will get summaries of study results during the course of the Sister Study. You will receive these summaries through regular mail and/or email or by visiting the Sister Study web site (www.sisterstudy.org).
Will my blood be used for genetic (DNA) testing?
Many participants' blood samples will be used for genetic (DNA) testing. Some of the most important questions that may be answered by the Sister Study are about relationships between genes and the chance that a woman will get breast cancer. It is important that you know that any analyses using your blood samples will NEVER include information that would identify you personally.
How do I reach a Sister Study staff member to get more information?
A trained staff member will answer your questions when you call toll-free 1-877-4SISTER (1-877-474-7837) or send an email to the Sister Study. Sister Study staff are trained to answer your questions and address any concerns you might have.