FAQs

For additional information or questions, please contact [email protected] or call (646) 497-2695.

MBC Connect

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.

Are there other resources out there like MBC Connect?

There are several registries that exist for the MBC community, each with its own focus and benefit to the patient community. These registries include: Dr. Susan Love Research Foundation’s The Health of Women (HOW) Study®, The Dr. Susan Love Research Foundation’s Metastatic Breast Cancer Collateral Damage Project, Cancer Support Community’s Cancer Experience Registry, The Broad Institute and the Dana­Farber Cancer Institute’s MBC Project (Dr. Nikhil Wagle), Susan G. Komen’s MBC Initiative (Dr. Monica Bertagnoli), the AURORA clinical trial, University of Wisconsin’s Exceptional Survivors Study (Dr. Mark Burkard), and the National Cancer Institute’s Exceptional Responders Initiative.

What are patient registries and why are they important?

A patient registry creates a central database where patients respond to questions and enter information about a specific condition or disease that affects them personally. The information is standardized, and can then be used by researchers and clinicians to inform important health research that can drive discoveries and new treatments.

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 survey questions and answer options 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.

What is the MBC Alliance trying to accomplish with MBC Connect?

The objectives of MBC Connect are the following: (1) provide the patient and caregiver community with an interactive registry; (2) provide researchers and health care professionals with a researcher portal where they can explore de-identified, patient-­entered data; and (3) connect patients to potentially relevant clinical trials and studies.

How can I download MBC Connect?

Patients and caregivers can download MBC Connect by following instructions on the MBC Connect website (www.mbcconnect.org) or you can find MBC Connect on the iOS App Store or Google Play.

Can a member of my family or care team enter information on my behalf?

Yes, you can allow your family members or support team to enter information on your behalf through the app or through our website.

Eligibility and Participation

Who is eligible to participate?

Anyone 18 years of age or older that has been diagnosed with metastatic breast cancer or provides or has provided care for someone with MBC.

Is MBC Connect available to patients and caregivers outside the U.S.?

Participation in MBC Connect is currently limited to MBC patients and caregivers in the U.S. The MBC Alliance plans to release the tool to additional countries in the future.

Are they any costs associated with participating?

No. No fees are required to download or use MBC Connect.

Data and Research

How will my data be used?

Information entered into MBC Connect by you and by other patients and caregivers will contribute to a powerful real-time database that can drive research, discoveries and advances hoped for by so many in the MBC community. This information will always be de-identified, following guidance provided by the U.S. Department of Health and Human Services (HHS) to comply with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.

How is patient information kept secure and who has access to it?

MBC Connect is designed to keep your information secure and confidential using encryption technology. Information can be accessed via the MBC Connect Researcher Portal where all personally identifiable factors are removed. All information will be encrypted as it is entered into MBC Connect, as well as when it is ‘at rest’ (i.e., in the cloud).

Privacy

Can I share my information from MBC Connect with my care team and/or family members?

Yes, MBC Connect offers you the option to request a PDF version of your information that can be shared with your care team or family at your discretion.

Can I opt out of MBC Connect or its communications?

Yes. You can opt out of communications and/or the registry itself by clicking on the “Profile” icon in the MBC Connect app and choosing “Opting Out” in the “Security & Permissions” section.

Additional Information

Are there any costs association with participating?

No. There are no fees required to download or use MBC Connect. (Please note that standard data fees from your service provider may apply when using MBC Connect.)

How will using MBC Connect impact my cellular data or battery usage?

MBC Connect seeks to minimize the impact that the app has on data and cell phone battery usage. For specific impact on your data plan, please contact your cell phone service provider.

If people want more information about the MBC Connect app, where should I direct them?

To download the MBC Connect app, we encourage people to visit the iOS App Store or Google Play.

Who should I contact if I have questions?

Please email [email protected] or call (646) 497-2695