Privacy & Security Statement

Purpose of Survey

The Breast Tumor & Breast Cancer Database Project has been created to gather and store comprehensive information from rare tumor and cancer patients and survivors, in a database structure that can be shared by all patients and researchers.

Participation

Thank you for participating in this survey.  Your participation is strictly voluntary.  You will not be required to participate, by any entity, for any reason.  Therefore, by participating, you also agree to the security and privacy guidelines set forth in this document.

Rare Breast Tumor Survey Privacy Policy

Since the goal of this database is to help us and researchers to learn more about our rare tumors and cancers, data from these records will be publicly displayed.  With this in mind, the Administrator has chosen not to display certain identifiable information that could clearly be used maliciously by identity thieves and others with similar desires.  This information includes, but is not limited to, last name, first name, street address, home phone number, birth-date, email address, and second contact person.

The information gathered in the survey will never be sold to marketers or any other outside parties.

Protection of Patient Identities and Survey Responses

The Administrator will take the utmost effort and care to protect the confidentiality of all records kept in the rare tumor database, including, but not limited to, computerized records; and will not disclose any information that should remain confidential.

All publicly displayable data entered by you will be archived and displayed for the entirety of this project.  If the participants , as a community, choose to disband the project, for any reason, the database will be completely purged and no records will be archived by the Administrator, in any format.

Security

Protecting the privacy of the patient information gathered from you is extremely important. With this in mind, the site administrator has used every security method available on this server, for the database, software, and website; but cannot guarantee that all present or future security breaches have been considered.  Therefore, your voluntary participation in this database project should in no way hold the Rare Cancer Alliance, it's Administrator, or it's data storage agencies legally accountable for any unforeseen loss of secured data.

Exceptions

Nothing in this Privacy Policy shall restrain the administrator from investigating and prosecuting any users of this site who attempt to defraud or damage us. Therefore, the administrator may share otherwise protected data with law enforcement, investigative agencies, or as directed by court order.

Notifications

The administrator may periodically modify this Privacy Policy. If so, those changes will be posted on this site so that survey participants are always aware of what information is collected, how it is used, and under what circumstances, if any, it is disclosed to others. If at any point, the administrator believes it would be beneficial to particular rare tumor patients to disclose information to a researcher, you will be contacted through email to make the choice to participate.

Questions or Concerns

Any questions, concerns, or suggestions regarding privacy or use of information may be addressed by using the 'Contact' link at the top of this page.