US-based Metastatic Breast Cancer (MBC) Alliance has developed a mobile patient registry app, MBC Connect, designed for MBC patients to drive research and aims to create a gateway between patients and relevant potential clinical studies and trials.
MBC is a stage four cancer which can be defined when the identified cancer has spread beyond the breast to other organs such as bones, lungs, liver or brain. The MBC Alliance stated that while estimation stands at 155,000 men and women living with MBC in the US, the exact number is unknown "because existing population-based cancer registries do not count metastatic recurrences". The MBC Alliance said that because fewer than 5% of diagnosed cancer patients participate in clinical trials including MBC patients, researchers often lack the data to drive new discoveries.
MBC Connect aims to offer patients and caregivers an interactive platform where they can store and update their information as their MBC experience changes, offering patients surveys to capture information such as MBC history and quality of life. Patients can also create a holistic treatment profile that captures information about treatments over time and provides them with personalized insights, MBC Alliance news and events, and potential clinical trial opportunities.
According to the MBC Alliance, the collected data will be "de-identified, encrypted, and stored in a HIPAA-compliant database that can be accessed via the "Explore the Data" button at www.mbcconnect.org".
MBC Alliance chairman Marc Hurlbert said: "MBC Connect is designed to address some very serious challenges in the MBC community.
"It not only represents an opportunity to unlock the mysteries of a marginalized patient population, it also represents a significant opportunity for a disease that's only received a fraction of breast cancer research funding," Hurlbert added.
MBC Connect is currently available for US patients but is set to release in four more countries in 2019.