FAQs

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.

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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

Data and Research

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.

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

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.

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

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.)

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.

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

Clinical Trial Matching – available only in the U.S.

Once you have updated the app to version 2.0 and completed the Demographics and Disease History surveys, you will see potential clinical trial matches appear. You are strongly encouraged to also complete your Treatment History and the Genetics Survey so you can get more targeted clinical trial matches.

MBC Connect is partnering with BreastCancerTrials.org (BCT) and Quantum Leap Healthcare Collaborative, its parent organization, to enable clinical trial matching on MBC Connect. BCT sources its clinical trial data from ClinicalTrials.gov, the US government’s official registry of clinical trials. To create accurate and patient-friendly results, BCT updates its data from ClinicalTrials.gov on a daily basis, prepares trials for matching, writes patient-friendly summaries for each trial, and provides additional filters for narrowing match results. MBC Connect accesses the BCT/Quantum Leap Trial Matching Service via a secure connection.

MBC Connect performs matches on nightly basis. Whenever a new trial has been added – that you are potentially eligible for – you will see a numbered badge on the clinical trial icon on the home screen.

The “Match Now” button allows you (or your caregiver) to request updated clinical trials. It is useful when your data has changed, or when you begin the decision-making process for entering a clinical trial and want access to the most up-to-date information. “Match Now” facilitates an on-demand matching request, but the results can take up to 15 minutes to arrive. Both you and your caregiver will be alerted when the matches are ready, either via phone or email. Remember to turn on phone notifications from MBC Connect to ensure timely alerts to new trials. The “Match Now” button appears on the Clinical Trials screen below the three large tiles.

When you receive an update alert from MBC Connect, download the new version from the AppStore and Google Play.

The MBC Connect app is updated via the AppStore and Google Play.

Instructions for Android

Instructions for iOS

The color-coding of the trial matches indicates whether or not you have viewed the listed trial. If you have not opened the trial, the app considers it “new” to you and shows it with a blue background. Once you have viewed the trial, it changes to a yellow background. If the trial has been dismissed, it is shown in gray and only available via the “Dismissed” tile. This is similar to the color-coding of new surveys (blue), in-progress surveys (yellow), and completed surveys (gray).

MBC Connect 2.0 is also available on the web at https://mbcconnect.org.

We are interested in learning why people dismiss trials to understand what concerns, needs, and wants patients have around potential trial participation.
MBC Connect collects the reason you are dismissing a trial approximately 1 of every 5 times you dismiss a trial. MBC Connect makes the decision to ask this follow-up question independent from the last time you dismissed a trial so it is possible you could be asked why you dismissed a trial two or more times in a row.

You can filter your trials by type (Treatment, Non-Treatment) and Phase using the funnel icon near the top, right corner of the app. When you click the funnel icon, you are taken to a checklist of filter options. From this list, you can select the types of trial you are interested in.

Clinical trial matching on MBC Connect uses data from your Demographic and Disease history. While not required, entering your Treatment Profile and Genetics Survey will substantially reduce the number of trial results and provide more targeted matching.

If, after entering all of that information, you still have too many trials in your list, you can use filtering to look at only a subset of the trials. Perhaps you are only interested in treatment trials or only interested in non-treatment trials. By filtering down to the types of trials most interesting to you, you will greatly reduce the total number of trials you need to examine.

You can share your trial information using the share icon. On your phone, you can share selected trials (with links) or trial details via SMS, email, or any other app you have enabled. On the web portal, you can share trial data via email.

Yes. All of the data entered in MBC Connect is kept private and encrypted in the system. You are encouraged to enter as much information as possible, knowing it is kept safe and secure.

You can opt-out of trial matching by sending an email to [email protected]. Once the feature has been disabled, you will receive an email confirmation. If you decide at a later date that you wish to receive clinical trial matches once again, simply send another email asking to be opted-in to the feature.

When you click on the title of a trial, you will see the trial details. At the bottom, you will find a link to the trial’s complete registration information on ClinicalTrials.gov. Links to additional information about the trial will be displayed when available.

The order of trials that you have matched to is based upon your home zip code. If you move or wish to look for trials in another location, you can change your zip code in your profile. The next day, after trial matching runs, the order of trials and the order of sites will be updated. You can also use the “Match Now” feature to trigger on-demand matching.

The “Match Now” button appears on the Clinical Trials screen below the three large tiles.

The “Additional Trials” button allows you to preview trials “coming soon” to MBC Connect. You can also view Phase I metastatic cancer trials that are not specific to breast cancer.

Clinical trials are conducted in a series of steps or phases. Each step or phase builds on the results of the phase before it. Phase I trials evaluate the safety, side effects, and best dose of a new treatment in humans for the first time. Phase II trials look at how effective the new treatment is. Phase III trials compare the safety and effectiveness of the new treatment to the current standard of care. Learn more here.

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