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What is a member profile?
A member profile for the Registry includes contact details such as name, date of birth, address, email, and phone number, as well as Registry account details. This information is required to operate the Registry. Members may also upload an optional photograph to complete their profile.
How do Registry Members contribute their medical records?
Registry Members may contribute medical reports related to their initial cancer surgery as well as reports documenting disease progression or recurrence to support research. Members contribute these reports to the Registry by completing the Medical Release Form on the website and submitting it to the hospital or facility where they had their surgery or procedure. All personal identifiers are removed from the reports before the data can be accessed for research to protect Member privacy.
What are research forms?
Research forms for the Registry ask specific questions to Members that are incredibly helpful to researchers. Some forms are only filled out once while others may be filled out multiple times. These questions include a wide range of topics, such as: demographics, lifestyle, reproductive history, family cancer history, and barriers to care. These forms also include questions about cancer diagnosis, treatment, symptoms, health screenings and care. These forms do not collect any personal identifiers to protect Member privacy.
What are additional opportunities for Members of the Registry?
The Registry includes initial opportunities to Members to support research but will also add other sub-studies and companion studies in the future. Members have the freedom to decide whether or not they want to participate in any of these other opportunities to support research.