NEW YORK, October 13, 2018 – Today, the Metastatic Breast Cancer Alliance launched MBC Connect, a free mobile and web-based tool for patients with metastatic breast cancer (MBC) that will build a powerful database of patient information to help drive research, discoveries, and advances for the MBC community. MBC Connect provides access to an interactive patient registry and a research portal with opportunities to explore de-identified patient data. The tool will also create a link between patients and potential relevant clinical trials and research studies.
“MBC Connect is designed to address some very serious challenges in the MBC community,” said Marc Hurlbert, Chairman, MBC Alliance. “It not only represents an opportunity to unlock the mysteries of a marginalized patient population, it also represents significant opportunity for a disease that’s only received a fraction of breast cancer research funding.”
MBC (or stage IV breast cancer) is defined as when cancer has spread beyond the breast to other organs in the body, most often bones, lungs, liver, or the brain. At stage IV, breast cancer is considered treatable but not curable. While it is estimated that up to 155,000 people in the U.S. are living with MBC, the exact number remains unknown. That’s because existing population-based cancer registries do not count metastatic recurrences. Further, fewer than five percent of adults diagnosed with cancer ever participate in a clinical trial, including those diagnosed with MBC, which leaves researchers without the robust data set necessary to drive new discoveries.
Traditionally, a patient registry is a place where patients can sign up and enter information about a specific condition or disease, which is standardized and then used to inform health research. However, most registries do not provide opportunities for patients to update their information or engage beyond initial sign up.
MBC Connect offers patients and caregivers an interactive experience where they can regularly update their information as their MBC experience changes over time. Patients and caregivers can respond to five brief surveys that capture information about who they are, their history with MBC, and their quality of life. Patients can also build a holistic treatment profile that captures information about their treatments over time. Participants will regularly receive personalized insights, including MBC news and events, and potential clinical trial opportunities.
“As a person living with MBC each day, I believe that MBC Connect – a resource developed by patients, for patients – will help accelerate research for the benefit of a community that demands progress,” said Shirley Mertz, President of the Metastatic Breast Cancer Network and a stage IV breast cancer patient. “Our goal is to make sure that patients are active and engaged partners in research – not merely subjects.”
All patient data will be de-identified, encrypted, and in a HIPAA-compliant database that can be accessed via the “Explore the Data” button at www.mbcconnect.org. Thus, MBC Connect provides a rare opportunity for patients to not only own and update their own information, but to analyze aggregated patient data themselves.
“MBC Connect can help patients feel connected to fellow MBC patients, and their physicians and care teams like never before,” said Timothy J. Pluard, MD, Medical Director of Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer in Kansas City, Missouri. “This level of information sharing and insights will help foster a sense of confidence and knowledge among patients that strengthens the doctor-patient relationship, which is such an important part of the patient experience.”
MBC Alliance will release the tool to four more countries in 2019. The patient app is available for download in the App Store or Google Play in English and Spanish. For the desktop version of the application, click here.
About the MBC Alliance
The Metastatic Breast Cancer Alliance (MBCA) is a consortium made up of representatives from 32 nonprofit organizations and 11 pharmaceutical/biotech companies, along with 18 individual patient advocates, many of whom are living with MBC. The mission of the MBCA is to improve the lives of, and outcomes for, those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding, specifically focused on metastasis, that has the potential to extend life, enhance quality of life, and ultimately to cure. For more information visit www.mbcalliance.org.
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