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Privacy and Consent

The Health of Women Study (HOW) of the Dr. Susan Love Research Foundation, in collaboration with City of Hope Comprehensive Cancer Center, considers it our utmost responsibility to safeguard your privacy and we will not share your identifiable research data with any individual or organization without your explicit permission. This means that no organization outside of the Dr. Susan Love Research Foundation will be able to link your health and personal, identifying information, such as your name, email address, mailing address, or telephone number. 

Types of HOW Study Pages 

Public Pages: 

The HOW Study has public areas that are open to both visitors and registered users. These include the HOW Study Public Home Page and several content areas that can be accessed from the top navigation bar: About HOW, HOW Research Team, HOW News, HOW FAQs, Join HOW, HOW Privacy Policy, and Contact Us. We collect de-identified information from anybody who enters these areas to help us evaluate and improve our website. We collect this information through the use of "cookies," which are small files that we place on your computer to gather data about your browser, the website you came from, areas you visited, the date and time of your visit, and whether or not you registered with our site. This information does not include any data that would enable us or anyone else to identify you. 

Password-Protected Pages: 

Special security is in place to protect pages containing personally identifiable and protected research data. These include data entry forms and the HOW Study research data files. Only registered users with valid usernames and passwords may display these pages to enter and/or view their own data. You create your password and username when you register with us. For your protection, keep your password in a safe place and share it only with individuals whom you have granted permission to view your HOW Study research data. Please advise us promptly if your password has been misplaced or stolen. 

All password-protected pages are stored on computers that reside in the Dr. Susan Love Research Foundation offsite secure hosting environment. This facility is accessible to only a few highly trained technicians. All access to the data center housing the computers and networking equipment is monitored by video surveillance 24 hours a day, seven days a week. 

External network access to the systems is protected by dual firewalls configured for dynamic failover. This means that if one of the firewalls fails for any reason, the other will take over automatically ensuring continuous and secure protected accessibility. All the servers and networking equipment have been set up in a fully redundant configuration eliminating any single point of failure. The facility has back-up electrical power, fire suppression systems, and restricted physical access via cipher-locks. 

When you transmit information to us from your computer over the Internet, your data are encrypted with the Secure Socket Layer (SSL) encryption technology. This means that data are translated into a secret code that can only be read by our computers equipped with a special key. You can verify this by noting the locked padlock symbol at the bottom of the data entry pages and the "s" in the URL (web address), i.e., https. In order to take advantage of encryption, you must have a browser that supports 128-bit encryption. 

How We Use Member Information 

De-identified Research Data:

Also referred to as summary data, these are group statistics that are not traceable to any one individual and which are collected from both visitors and registered users. We use summary data to evaluate our site and to report on its usage to potential users, funding agencies, and members of the research community. Summary data may appear in marketing pieces, scientific papers, grant applications, and internal progress reports. 

Personal Identifiable and Protected Research Data: 

The HOW Study uses your protected research data primarily to understand health trends when it comes to the cause and prevention of breast cancer, and other diseases as we see fit. The Dr. Susan Love Research Foundation (DSLRF) research team may use the HOW Study members' personal identifiable information to contact them about future questionnaires for the HOW Study.

The DSLRF team will ask the HOW Study members to participate via email. Participation will be voluntary. 

All participants in the HOW Study are protected by a Certificate of Confidentiality. Certificates of Confidentiality are issued by the National Institutes of Health (NIH) to protect identifiable research information from forced disclosure. They allow the investigator and others who have access to research records to refuse to disclose identifying information on research participants in any civil, criminal, administrative, legislative, or other proceeding, whether at the federal, state, or local level. 

Only a small number of individuals at DSLRF are authorized to access your identifiable HOW Study research data. These employees are bound by our policy not to share protected research data. Those who violate this policy are subject to disciplinary action, including termination. We may on occasion have outside individuals or companies provide assistance with specific services, e.g., responding to members' questions. We require that all such individuals and companies sign written agreements to abide by our privacy policies and that they access only information that is necessary to meet their responsibilities. We also require that any information they acquire in the normal course of their duties not be used for any other purpose. 

In spite of conscientious efforts we make to prevent unauthorized parties from gaining access to the information you submit to us, we cannot guarantee that such access or tampering will never occur, or that the information submitted by you will be protected against loss, misuse, or alteration by third parties. 

Communication Between You and the HOW Study 

Your Communication With Us:

A link to Contact Us appears on all of our web pages. This page displays ways to access technical support either at how@dslrf.org or (866) 569-0388.  Please note that email messages that you send through your regular email software are not encrypted transmissions and are not protected by this privacy policy. 

Our Communication With You: 

We will send you "Call-to-Action" emails for all future questionnaires or notices about system changes to the HOW Study. All emails from the HOW Study will be displayed in your "Inbox" as "From the Dr. Susan Love Research Foundation”. 

Application of this Privacy Policy 

This privacy policy applies only to our Web site, www.healthofwomenstudy.org. It applies neither to other Web sites hosted by DSLRF nor to any Web site links we may provide on our site. Once you leave our site, we are not responsible for how other websites treat your privacy. Therefore, you should read the privacy policy of each of the websites you visit after leaving the HOW Study website. 

Privacy Policy Changes 

In the event that our Privacy Policy changes in a significant way, we will notify you of the change(s). 

Deleting Your HOW Research Data 

Taking part in this study is completely voluntary. If you agree to participate and change your mind later, you can withdraw from the study at any time. If you decide to stop participation in the study, there is no penalty of any kind. Refusing to participate or withdrawing from participation at a later time will not affect your relationship with the Dr. Susan Love Research Foundation. To withdraw from participation, you must access your HOW account online and follow the instructions for withdrawal. You are responsible for ensuring the accuracy of your personally identifiable and protected research data. 

Acceptance of Privacy Policy 

By registering with the HOW Study, you certify that you have read and understood the policy, and grant the HOW Study the right to receive, transmit, monitor, retrieve, store, and use both the personally identifiable and questionnaire data that comprise your Research Data.