MBC Connect is a patient experience registry where you can share info about your diagnosis and treatment history to help advance research and get potential matches to clinical trials.
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What is MBC Connect?
MBC Connect is a free, web and mobile-friendly tool for the estimated 155,000 men and women living with MBC in the U.S. It helps you store important information about your MBC disease history, experiences, as well as your quality of life. MBC Connect also provides researchers and clinicians with a powerful database that can drive research, discoveries, and advances hoped for by so many in the MBC community.
How MBC Connect Works
“MBC Connect can help patients feel connected to fellow MBC patients, and their physicians and care teams, like never before.”
“As a person living with MBC each day,
I believe that MBC Connect will help accelerate research for the benefit of a community that demands progress.”
“We're working hard to unlock the mysteries
of a marginalized patient population that's
only received a fraction of breast cancer
Frequently asked questions
What is MBC Connect?
MBC Connect is a free mobile and web based tool for the metastatic breast cancer (MBC) community. Available in English and Spanish, the app not only helps you store important disease and health information, it also provides researchers and clinicians with a powerful real-time database that can drive research, discoveries and advances hoped for by the estimated 155,000 women and men in the U.S. who are living with MBC.
How will MBC Connect benefit the MBC community?
MBC Connect empowers patients and caregivers by providing the opportunity to be active and engaged partners in important research. At the same time, researchers, and health care professionals benefit in two ways: (1) they can access a real-time, deidentified database that can drive research and discoveries; and (2) they can use it to identify patterns, trends, and strategies that may effectively treat different types of patients. In addition, researchers can leverage the database to submit additional approved survey questions.
How is MBC Connect different from traditional registries?
MBC Connect is interactive. It provides you with the opportunity to reengage and keep your data updated in real time as your MBC experience changes. For instance, you can respond to simple surveys that capture information about who you are, your history with MBC, and your quality of life as an MBC patient. You can also build a holistic treatment profile that captures information about your treatments over time. To preview the questions and answer options for the five original surveys, please click HERE. MBC Connect also provides you with regular, personalized insights and alerts about potential relevant clinical trial opportunities, as well as information about MBC webinars and events.
Which organization is responsible for this registry?
MBC Connect is an initiative led by the MBC Alliance. The MBC Alliance was formed in 2013 and is the largest coalition in the U.S. focused on metastatic breast cancer. The membership comprises nonprofit organizations, pharmaceutical and biotech companies, and individual patient advocates or patients living with MBC. Click HERE to view a listing of the current members. The goals of the MBC Alliance are to (i) advance MBC research, (ii) increase access to MBC information and support services, and (iii) increase awareness of how MBC is different from early stage breast cancer.
The MBC Alliance is striving to improve the lives of, and outcomes for, those living with MBC and their families through increasing awareness and education about the disease, and advancing policy and strategic coordination of research funding. For more information, visit www.mbcalliance.org.
Your privacy is important
MBC Connect is designed to keep your information secure and confidential. We use encryption technology to keep your data safe while it is in transit and when it is stored. The researcher portal displays results in both aggregate and de-identified formats. Our de-identification method follows guidance provided by the U.S. Department of Health and Human Services (HHS) and complies with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. At any point, you can request to opt out of the registry by visiting “Your Profile”. If you have any questions, please email us at firstname.lastname@example.org.