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Topic: Getting your health records and research participation

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jan 24, 2020 02:38PM - edited Apr 13, 2020 03:30PM by Moderators

Moderators wrote:

Hello to our community members and BCO visitors,

Breastcancer.org and Ciitizen are inviting you to be part of a patient-focused research initiative that will collectively analyze health records of approximately 100 people in the United States with metastatic breast cancer. The goal of this study is to analyze which treatments metastatic breast cancer patients are receiving to describe patterns of care. The data will help patients like you gain a better understanding of treatment and care options.

What's in it for you? In addition to knowing that your health data will help inform future research and metastatic breast cancer treatments, Ciitizen will provide you with a complete, digital, mobile record of all your health information that you can have in one place to share with caregivers, use for second opinions, or apply to clinical trial matching. Our hope is that you too may benefit from the information that you and others share, as well as from having all your records in one secure location. We will remove all common identifiable information such as your name, date of birth, and address from your health information before we analyze your data so that no one who sees the data would be able to tie your information back to you.

How it works? Tell Ciitizen where you have received care, and they will gather your records and upload them to your personal and protected profile. Note: You will need to have a picture ID (driver's license works great) to verify your identity. Then you may choose to share with our, and other, research initiatives directly from your profile. Your profile is always in your control.

To learn more and enroll visit www.ciitizen.com/bco/mbc-research. If you have already enrolled with Ciitizen, you may go back into your personal profile and opt-in to share with our research initiative. Please feel free to contact us at comments@breastcancer.org with questions or feedback.

Grateful in advance for your participation,

Your BCO Team and Ciitizen

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Apr 14, 2020 09:47AM - edited Apr 15, 2020 03:58PM by Moderators

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Apr 15, 2020 03:59PM - edited Apr 20, 2020 11:56AM by Moderators

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Apr 16, 2020 05:56AM - edited Apr 20, 2020 11:56AM by Moderators

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Apr 20, 2020 11:56AM Moderators wrote:

bump

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