We hope this information helps you answer some of the most common questions about the Health of Women (HOW) Study. If you have any other questions, please send us an email at firstname.lastname@example.org.
What is a cohort study?
A cohort study looks at a group of people over time, collecting data that can be analyzed to find common risk factors for a disease or common characteristics among the group. The HOW Study will look at a large group of women (and men), with the goal of identifying new risk factors for, and potential causes of, breast cancer. HOW will also study women and men with breast cancer, including those who have metastatic disease or are long-term survivors, to identify factors that are linked to long-term survival. HOW is a groundbreaking cohort study as it is the first study of this size to collect data entirely online.
Who is involved in the HOW Study?
The Dr. Susan Love Research Foundation is conducting the study in collaboration with Dr. Leslie Bernstein from City of Hope Comprehensive Cancer Center (www.coh.org
). Dr. Bernstein is an epidemiologist experienced in this type of research who is working with us on the design of the study and analysis of the results.
Who can be part of the HOW Study?
Any woman aged 18 or older can participate. All you need is an email address and access to either a computer or a mobile device with internet. We need women who have never had breast cancer and those who have; women who have had recurrences and women who have not. We need women of all ethnicities, sexual orientations, ages, and occupations. It is only by studying a large group of diverse women that we will find the answers that will apply to everyone. Men can join the HOW Study if they have been diagnosed with breast cancer or are at high risk for breast cancer. We believe that there are probably some important clues to what causes breast cancer that can be uncovered by studying men with the disease.
What do I have to do?
As a member of the HOW Study, you will be asked to complete periodic questionnaires online. These questionnaires will be released to you through a “Call to Action” email. Each questionnaire will focus on a different health or exposure topic. You just have to log in to your HOW Account, complete and submit each questionnaire.
How long will the HOW Study be conducted?
We plan to follow the members of the HOW Study over time. This will allow us to track lifestyles, environmental exposures, and other potential causes of breast cancer in the most thorough manner. We therefore ask that you let us know if and when you change e-mail addresses or move so we don't lose touch with you. While we hope that our members will be willing to participate in the study over time to help generate the best data possible, you can choose to withdraw from the study at any point. You are in complete control!
Can I stop participating if I want to?
You are free to drop out of the HOW Study at any time. To withdraw from the HOW Study, you will need to access your HOW account online and follow the instructions for withdrawal.
If I withdraw from the HOW Study, what will happen to all of the information I have already submitted?
By choosing to withdraw from the HOW Study, you will no longer receive emails about the study or be asked to complete any further questionnaires. Any information and data you had previously submitted will be retained by the Dr. Susan Love Research Foundation and will be used as part of the Health of Women Study and contribute to our goal of understanding the causes of breast cancer and ways to prevent it.
At any time, you can re-join the HOW Study by visiting www.healthofwomenstudy.org and clicking on the “Reactivate my Account” link at the top of the page. If you choose to reactivate your account, you will not need to complete any questionnaires that you had previously submitted.
If I’m a member of the Army of Women (AOW), will withdrawing from the HOW Study also withdraw me from the AOW?
No. Withdrawing from the HOW Study will in no way affect your status as an Army of Women member. You will continue to receive Call-to-Action emails from the Army of Women about other research studies.
What is the difference between the Army of Women and the HOW Study?
Both the Army of Women (www.armyofwomen.org
) and the HOW Study are programs of the Dr. Susan Love Research Foundation. Women join the Army of Women because they are willing to consider participating in research. The HOW Study is one of the studies being recruited for through the Army of Women. You do not need to be an Army of Women member to be a member of the HOW Study and you do not need to be a member of the HOW Study to be a member of the Army of Women.
Can women from countries other than the US participate in the HOW Study?
Yes, all women aged 18 or older can participate!
Who will have access to my data?
The Dr. Susan Love Research Foundation will be the primary keeper of your information. This includes both your research data and your personal contact information. The Dr. Susan Love Research Foundation will be working with City of Hope Comprehensive Cancer Center to analyze the data we collect, however they will only have access to your anonymous research data and not your personal information (like your name and address). Only the Dr. Susan Love Research Foundation will have access to both your personal and research data and these two pieces of information will be never be stored in the same place to protect your privacy. There may also be instances where your research data is shared with other scientists to help their research. As with City of Hope, these researchers will never have access to your personal contact information.
Can other scientists have access to the data collected by the HOW Study?
Yes. We encourage the sharing of data that has been de-identified. De-identified means that the data has nothing attached to it that would allow a researcher to figure out who you are or contact you directly. It is anonymous. Our goal is to find the cause of breast cancer and for that we need all the brain power we can harness.
Will the HOW Study also look at other cancers and diseases in women?
Our initial goal is to find the causes of, and prevention for, breast cancer. But once we have established our large online database, it would be a crime not to use it to find links with other diseases as well. We will be looking for all kinds of connections and causes over time.