About This Site

Breast Screening Decisions is a website to help you make informed, personalized decisions about when to start and how often to have screening mammograms.

Who Should Use This Site?

  • Breast Screening Decisions is for women ages 40-49. If you are outside this age group, BSD is not for you.
  • Breast screening Decisions is for women at low to average risk of breast cancer. BSD starts with a breast cancer risk assessment - a series of questions to help you find out your breast cancer risk. If you are at higher than average risk for breast cancer, BSD is not for you. We recommend that you speak with your doctor about which breast cancer screening schedule is best for you.

Who Runs This Site?

Breast Screening Decisions was developed by researchers at Weill Cornell Medical College and Memorial Sloan Kettering Cancer Center who are interested in helping women and their doctors make informed decisions about health screening.

Breast Screening Decisions was conceived and developed by

with advice and expertise from

  • Alvin Mushlin, MD, ScM Nanette Laitman Distinguished Professor of Public Health, Weill Cornell Medical College
  • Tessa Cigler, MD, MPH. Assistant Professor of Clinical Medicine, Weil Cornell Medical College
  • Marwan Shouery, MS, Senior Programmer Analyst, Memorial Sloan Kettering Cancer Center
  • Paige Nobles, MA
  • Val Pocus, BS

We are indebted to the clinicians and patients of the Iris Cantor Women's Health Center and the Primary Care Practices of Weill Cornell Medical College, who volunteered their time and effort to the pilot study of BSD.

Who Funds This Site?

Breast Screening Decisions is a public, non-profit site developed with funding from the National Institutes of Health via a Pilot Grant from the Clinical Translational Science Center at Weill Medical College. Public access and ongoing site maintenance are made possible through private donations. This site accepts no pharmaceutical funding or advertising.

What About My Privacy?

Breast Screening Decisions is a public site, but it is also an anonymous site.

We do not collect any personally identifying information about you or your family. We do not collect IP addresses, email, names, birth date or any of the 18 HIPAA identfiers that could be used to identify you.

If you do choose to create a login to save your information on our site, please do not choose a user name or password that could be used to identify you. (See this list for private information to avoid sharing.) Because we will not store email addresses, make sure you write down your login ID and password in a safe place as we will have no way to help you recover it if you forget it.

Disclaimer

It is not our intention to provide specific medical advice to users of this website, but rather to provide users with information to help them make informed decisions about screening mammograms.

No information on this site is shared with clinicians at Weill Cornell Medical College. It is up to you to share the summary page with your doctor if you wish to do so.

The breast cancer risk given is based on the answers you provide to the risk assessment questions. Users of this site are responsible for the correctness of the answers they give to the risk assessment. If these answers are incorrect, the risk may not be accurate. If you are not certain about the answers to the risk questions, you should not rely on the risk data, but speak instead to your clinician, who can help you calculate your risks as best he/she can based on the information you provide.

Nothing on this site is intended to replace the advice of your physician or other qualified health care provider.

We urge you to consult with your doctor for diagnosis and for answers to personal medical questions.

How We Designed This Site

  • BSD was developed using the Ottawa Decision Support Framework and evidence-based recommendations for risk communication.
  • BSD meets International Patient Decision Aid Standards (IPDAS) for development and content. The reading level of BSD is 8th grade.
  • BSD was studied with over 150 women and their doctors in Primary Care and Ob-Gyn practices at the Weill Cornell Medical Center. We hope to publish the results of this pilot in early 2015.
  • The Breast Cancer Risk Assessment used in BSD was built using open source code from the NCI BCRA TOOL, based on the Gail Model, with additional questions to identify women with family and personal histories that would exclude them from using BSD.
  • For geeks - The website you are reading was built using HMTL/Jscript and CSS built over a bootstrap responsive template. The back end is a .Net class library provided by NIH for institutions. The .NET class is what makes up the algorithm for calculating the risk. CF is used to communicate between the .NET classes and the front-end.

Where We Get Our Numbers

  • We calculate risk of developing breast cancer using a mathematical formula known as the Gail model. This formula uses information about a woman's medical history, reproductive history and family history of breast cancer to estimate her own personal risk of developing invasive breast cancer over specific periods of time. The Gail model has been tested in large populations of white women and has been shown to provide accurate estimates of breast cancer risk. It has been shown to perform well in African-American women, but may slightly underestimate their breast cancer risk, especially if they have a history of breast biopsies. The model has been validated for Asian and Pacific Islander women. It has not yet been validated in Hispanic women. More information about the Gail model for estimating breast cancer risk can be found here.
  • Information about the results of screening mammograms for women in their 40's is from a large, federally-funded study of women who had regular screening. Researchers in the Breast Cancer Surveillance Consortium (BCSC) looked at the results of screening mammograms for more than 600,000 women living in different areas of the US between 2000 and 2005. You can read more about the BCSC here.
  • Information about the effect of screening mammograms on the risk of dying from breast cancer is from a large, federally-funded study* that used computer models to simulate the population outcomes of different screening schedules for women of different ages. You can read more about this research here.

    * Mandelblatt et al. Effects of mammography screening under different screening schedules: model estimates of potential benefits and harms. Annals of Internal Medicine, 2009;151:738-747.

Using BSD In Your Research

We welcome collaborators interested in studying the effectiveness and impact of BSD in clinical practice. To this end, we maintain a separate research version of BSD, developed by the Core for Online Research Tools at Memorial Sloan Kettering Cancer Center. The research site allows for ascertainment of informed consent and collection of end-user data in adherence with HIPAA and research privacy standards.

If you're interested in collaborating with us, please contact Elena Elkin, PhD (elkine@mskcc.org) or Margaret Polaneczky, MD (mpolanec@med.cornell.edu).

Updates

BSD is updated annually and whenever new evidence warrants it. Last updated September 7, 2016.