Frequently Asked Questions
WHAT DOES THIS STUDY INVOLVE?
How long will the study last?
Participants will be followed for at least 10 years.
Will it cost me anything to participate?
There is absolutely no cost to the participants, except for their time.
Will I get paid to participate in the Sister Study?
No. Volunteers who enroll in the study are not paid. You will, however, receive a small token of our appreciation such as a phone card for long-distance calling.
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.
All institutions, including the National Institutes of Health (NIH), that receive funds from the Department of Health and Human Services to conduct or support research with human subjects must follow specific rules and are guided by ethical principles of a document known as The Belmont Report (see the complete Report at the website http://ohsr.od.nih.gov/guidelines/belmont.html). NIH has developed a system of education and approval procedures to assist investigators in understanding and complying with well-established ethical and regulatory requirements. 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://ohsr.od.nih.gov/info
Can I enroll my sister who does not have breast cancer?
Because this is a volunteer study, we can only enroll women we speak to personally. That way we can be sure women understand the study and its requirements, and are willing to make the commitment over the next 10 years. But, we would be happy to provide your sister with information about the study, or send you information that you can send to her.
What will my sister with breast cancer have to do?
Your sister with breast cancer will not need to do anything. We will ask the sister who joins the study a few questions about her sister’s breast cancer. This information is completely confidential.
Who is collecting the data for NIEHS?
A professional services research firm, specializing in health studies and epidemiologic research, works closely with NIEHS investigators to recruit participants, collect data, and manage the day-to-day activities of the study. In July of 2005, the research firm (CODA) became part of Social and Scientific Systems, Inc. More information can be found at http://www.s-3.com/SES/ses.htm
How much time will it take me to complete the study activities?
The enrollment process should take about 15 minutes. Collecting your samples and completing the questionnaires in your kit will take about two hours and the home visit will take about 30-45 minutes. The telephone interview will be in two parts, each lasting about an hour. So, you will spend roughly 5 hours total in the first few months. Then, you will need about 15 minutes every year to complete health and address update forms and about 30 minutes every two years to complete a follow-up interview answering new questions about your health and environment.
Can I complete my study activities from my winter/vacation address?
We would like you to complete all first year study activities from your primary residence, that is, the residence at which you spend the most time. This allows study staff to coordinate the sample collection, the home visit, and the telephone interview in a timely manner. It also makes sure that the information and samples we collect reflect your usual activities.