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 is looking at a large group of women and men with the goal of identifying new risk factors for, and potential causes of, breast cancer. HOW also studies 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 and to document changes to their quality of life caused by breast cancer and its treatments.
Who is involved in the HOW Study?
Dr. Susan Love Research Foundation is conducting the HOW Study on an ongoing basis. The study began as a collaboration between Dr. Susan Love Research Foundation and City of Hope. City of Hope (http://www.cityofhope.org) is a National Cancer Institute-designated Comprehensive Cancer Center known for compassionate care and innovative research. Within City of Hope lies the Beckman Research Institute, which has advanced breakthroughs in scientific discovery for 25 years.
A research team headed by Dr. Leslie Bernstein at the Beckman Research Institute served as experts in the fields of epidemiology and the conduct of cohort studies for HOW. Their collaboration ensured that the HOW Study was and still is able to obtain valuable and useful data. Following their initial assistance in designing the study, analyzing the data, and disseminating the results of our analyses, we continue to answer numerous current and important questions about many aspects of breast cancer.
Who can be part of the HOW Study?
Any person 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 capabilities. We need women and men who have never had breast cancer and those who have, people who have had recurrences and people who have not. We need people 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.
What do I have to do as part of the HOW Study?
As a member of the HOW Study, you will periodically be asked to complete questionnaires online. These questionnaires are released to you through a “Call to Action” email. Each questionnaire focuses on a different health or environmental exposure topic. You log in to your HOW account to complete and submit each questionnaire.
How long will I need to be involved in the HOW Study?
We plan to collect data through the HOW Study indefinitely to allow us to track lifestyles, environmental exposures, and other potential causes of breast cancer, among other things. We ask that you let us know when you change your email address 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 a significant period of time, 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 withdraw from the HOW Study at any time. To do so, 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 have previously submitted is retained by Dr. Susan Love Research Foundation for use as part of the Health of Women Study to contribute to our goal of understanding the causes of breast cancer and ways to prevent it.
And you can re-join the HOW Study at any time 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 have previously submitted.
If I’m a member of the Army of Women®, will withdrawing from the HOW Study also withdraw me from the Army of Women?
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 (www.healthofwomenstudy.org
) are signature programs of Dr. Susan Love Research Foundation. Women join the Army of Women because they are willing to consider participating in research – either the HOW Study or a study conducted by other researchers. You do not need to be an Army of Women member to be a participant in the HOW Study, and you do not need to be a participant in the HOW Study to be a member of the Army of Women. Many people participate in both, however.
Can people from countries other than the United States participate in the HOW Study?
Yes, all people aged 18 or older can participate!
Who will have access to my data?
Dr. Susan Love Research Foundation is the primary keeper of your information – both your research data and your personal contact information. Only Dr. Susan Love Research Foundation has access to this information. To protect your privacy, we will never store these two sets of information in the same place. Dr. Susan Love Research Foundation still works with City of Hope Comprehensive Cancer Center to analyze your data; however, they have access only to anonymous research data and not to personal information (like your name and address).
There may also be instances where your research data are shared with other scientists to forward their research. Like City of Hope, these researchers have access only to anonymous research data and not to personal information.
Can other scientists have access to the data collected by the HOW Study?
Yes. We encourage the sharing of data that have been de-identified. “De-identified” means that the data have nothing attached that would allow a researcher to figure out who you are or contact you directly. The data are 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 breast cancer and ways to prevent it. But once we have established a large enough online database, we definitely plan to use it to find links with other diseases. We will be looking for all kinds of connections and causes over time.