The Metastatic Breast Cancer Alliance (MBCA), the largest coalition of nonprofit breast cancer organizations, pharmaceutical/biotech companies, and patient advocates in America, released MBC Connect 2.0, an interactive web-and-mobile-friendly patient registry empowering patients to collaborate with researchers to advance metastatic breast cancer research. Patient to clinical trial matching comes next.
The Problem MBCA is trying to Solve?
As it stands today, only 1 in 20 people with cancer ever take part in a clinical trial. Yet a growing array of cancer studies, including those for investigational metastatic breast cancer treatments, are available and need participants. This represents a fundamental disequilibrium adversely affecting research progress and patient options. Many new experimental medicines can save lives. In fact, a growing and complex array of options makes the process of trying to participate in a clinical study even more daunting. Hence, if 1) a trusted patient advocacy-based organization can 2) create a user friendly register technology that 3) intelligently matches patient to appropriate study then 4) the trial to patient imbalances may be addressed.
What is MBC Connect 2.0?
A dynamic patient registry, MBC Connect 2.0 allows breast cancer patients in the U.S. to enter their demographic information and disease history in a secure, encrypted manner, thereby matching patients to potential researcher clinical trial based on a number of matching criteria.
MBC Connect 2.0 has been designed, reports MBCA press release, to simplify the present trial search process, which due to well known causal factors, limits ways to simply and quickly find and research potential clinical trials. Today without technology augmentation, finding the right clinical trial for a breast cancer patient takes to much time and effort.
A Digital Diary
This portal allows patients to keep a record of their own metastatic breast cancer story and easily share it with their care team and doctors, along with potential clinical trials matches. This streamlines the review process while facilitating further communication between patient and doctor.
Trial Matching Partnership
By partnering with BreastCancerTrials.org (BCT) and Quantum Leap Healthcare Collaborative, its parent organization, the new registry can facilitate clinical trials matching. BCT sources it clinical trial data from Clinicaltrials.gov, the U.S. government’s official registry of clinical trials. BCT adds more value in the form of filtering and of course emphasis on breast cancer trials. They update their system with data from ClinicalTrials.gov on a daily basis and include patient-friendly narratives for MBC Connect.
Comments on Trial Matching Services
TrialSite News is observing a growing array of clinical trial to patient matching portals and related digital services, most with mobile-friendly offerings. These technology offerings are addressing therapeutic area, patient demographic and other factors. It becomes ever more complicated as so many organizations seek to address the fundamental imbalance between growing number of complex research studies and actual patient engagement. Technology undoubtedly helps but it represents only one piece to the puzzle. We believe that it is overall positive that formal patient organizations sponsor these matching services. Typically these organization garner more trust with patients than either A) government agencies B) private sector, profit seeking organizations. The patient advocacy groups are committed to understand their area of focus and make it part of their mission to address, most of the time, the patient’s interest. However non-profits can also expand to fast and mandates for growth start superseding patient-centric mission. So, ultimately, patients (and their loved ones) must become more educated about their condition which all things being equal, affords them more options and choices that reflect a thorough and detailed analysis based on their needs and no others.
The largest coalition of nonprofit breast cancer organizations, research companies and patient advocates in the U.S., including patients living with metastatic breast cancer, collectively working to transform and improve the lives of those living with the disease.
Call to Action
Have you or a loved one been diagnosed with metastatic breast cancer? In addition to following your physician and oncologist directives, check out this tool to consider other forms of education to learn more about relevant research today. See more here.