World Cancer Day on February 4 is an international day of awareness that invites us to reimagine a world where millions of cancer deaths are prevented, and access to life-saving cancer treatment and care is equitable for all – no matter who you are or where you live.
It’s a fitting day to both celebrate progress and amplify one way the Metastatic Breast Cancer Alliance is working to accelerate research and increase access to potentially lifesaving clinical trials: through MBC Connect™, our interactive patient experience registry for people living with metastatic breast cancer (MBC) and their caregivers.
Created in partnership with Medaptive Health (now Greenphire), MBC Connect was launched in 2018 as a free app, available for both Apple and Android devices, and web-friendly tool that asks users to respond to brief surveys about who they are, their history with MBC, their treatment history and their quality of life. All provided information is de-identified, encrypted and HIPAA-compliant
By sharing information through the registry, participants provide researchers and clinicians access to a powerful data set that can help drive the advances hoped for by so many in the MBC community. Because metastatic breast cancer currently receives less attention and research than primary breast cancer, this patient-powered data is a vital resource in the effort to transform lives and outcomes.
MBC Connect also offers people living with MBC a way to easily store and share their treatment profile, view personalized insights, receive relevant news and events, explore aggregate registry data, and get automatic matches to potential clinical trial opportunities.
“Previously, people living with MBC had to spend hundreds of hours on clinicaltrials.gov, a tool that was never intended to be user-friendly to a metastatic patient, to find clinical trials relevant to them,” said Laurie Campbell, Executive Director of the MBC Alliance. “MBC Connect fills a critically important need as a tool that regularly provides helpful and relevant information, along with sharing trials for which patients may be eligible.”
Celebrating progress toward patient-powered research and easier access to trials
Since the registry’s launch, more than 1,100 patients and 20 caregivers have enrolled in MBC Connect, with an average of 73-79% completing the five core surveys – an impressive completion rate that gives researchers access to a full set of meaningful patient-reported data.
More than 600 participants have shared information on over 3,700 treatments, with an average of 5.5 per user, providing researchers with unique insights into treatment patterns from across the US. MBC Connect participants come from 48 states, the District of Columbia and Puerto Rico.
Through the trial matching feature, which allows users who have provided sufficient information via surveys to get regular notifications of clinical studies that may be relevant to them, around 25% of registry participants are engaged with trial matching in some form at any given time. Over 500 clinical trials are currently in the database, 83 of which are focused on specific mutations. Of the trial matches delivered to patients, 1,363 have been viewed and 638 have been saved for future reference.
A cross-sectional study was also conducted through MBC Connect to survey patients on their experiences during the COVID-19 pandemic. The two-part REACT (REthink Access to Care & Treatment) Survey collected data from 341 validated participants to assess and modify patient management strategies to clinical protocols in oncology care, and will be submitted for publication in early 2023. Through the power of shared patient experiences, healthcare leaders can optimize these protocols for future health emergencies.