Frequently Asked Questions
WHAT ARE THE STUDY REQUIREMENTS?
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
- stay in touch with us for the full length of the study
Can you tell me about all that is required?
We will ask you to complete several study requirements in the weeks immediately following your enrollment. We’ll then ask you to complete a set of follow-up requirements over the next 10 years:
During the first few weeks we will ask you to —
- Agree to have a fasting blood sample drawn by a female professional
staff person from a company called EMSI (Examination Management Services,
Inc.), which specializes in medically related home visits. The EMSI examiner
can come to your home or place of work. During her visit, she will measure
your height and weight, hip and waist circumference, and blood pressure
- Collect a sample of your —
- first urine of the day
- toenail clippings
- house dust
- Complete the 4 questionnaires that are included in this Sister Study
Kit. They should take a total of about 90 minutes to complete. The
EMSI examiner will pick up the filled-out questionnaires from you when
she comes to draw your blood.
- Complete a detailed phone interview, which will be conducted in two parts, each part lasting about an hour.
After these initial activities are completed, we’ll ask you to —
- Keep us updated each year on any changes to your address, phone number
or health status. We will provide you with forms so that you can notify
us about important changes as soon as they occur. Or, you may call
and report these changes to the Sister Study Help Desk at 1-877-4SISTER
(toll-free) and follow the directions for enrolled participants.
- Fill out a questionnaire or do a telephone interview every other year
you are in the study.
- If you are diagnosed with breast cancer while you are in the study, we will ask for your permission to contact your doctor for information about your breast cancer, and to get additional biological samples. You may choose whether to grant us permission to do this at that time. If you are diagnosed with some other type of cancer, or a disease such as osteoporosis, heart disease, diabetes, or autoimmune disease, we may also ask you for permission to contact your doctor to get additional information about the condition.
There is no cost to you for participation. We have sent you a phone card in the Sister Study Kit in appreciation of your contribution to this research. We will also send you information about your diet based on your answers to the Diet Questionnaire and a urine glucose (sugar) report based on the urine sample you provide.
Why is the initial interview so long?
Because breast cancer is a complex disease likely caused by many factors, we need to ask a lot of questions. Questionnaires are an important source of information for this study. They allow us to learn about family history, lifestyle, diet, occupational history, residence, medical and reproductive history, and environmental exposures in an organized way. That is, we get the same information from everyone in the study in the exact same way so that we can combine the answers in summary statistical reports. There are a lot of questions to answer during your first interview, but remember you only have to do the long interview one time!