Guest Post by Corrie Painter, Ph.D
The Metastatic Breast Cancer Project is a nationwide patient-driven research project launched at the Broad Institute of MIT and Harvard & Dana-Farber Cancer Institute in October of 2015. Along with our advocacy partners (the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Living Beyond Breast Cancer, Young Survivor Coalition, the Inflammatory Breast Cancer Research Foundation, Avon, and others) and hundreds of people with metastatic breast cancer (MBC), we have built this study so that we could rapidly accelerate the pace of discovery and make impactful discoveries for people living with this disease.
Through social media, our advocacy partners, and our patient partners, more than 1,100 people living with MBC have joined the project. We are already collected our first batch of saliva samples, medical records, and tumor samples from our earliest participants – and are now beginning to perform next-generation sequencing on these first tumor and saliva samples.
We are committed to updating registrants with information about what we are learning along with information about people who have enrolled in the study. To that end, we recently sent an update to the entire cohort of registrants, which contained the following information:
‘Of the 1000 people who have enrolled in the MBCproject, more than 95% of you answered the 16-question survey about your cancer and treatments. So far, we’ve learned that the average age of our respondents is 52 years old, ranging from 26 years old to 90 years old. On average, our respondents were 45 years old at the time of initial diagnosis with breast cancer and 49 years old when you were first diagnosed with metastatic disease. The average time between initial diagnosis and diagnosis of metastatic disease was 4.2 years — though more than 300 of you were diagnosed with metastatic disease from the outset (“de novo” metastatic disease) and many of you were diagnosed with metastatic disease more than 10 years after your initial diagnosis. On average, our respondents were diagnosed with metastatic disease 3 years ago, though many of you were diagnosed with metastatic disease within the past year. 50 of you were diagnosed with metastatic disease more than 10 years ago. This is really important information for metastatic breast cancer research — and helps us frame how we are going to ask and answer key biological questions in this disease.’
We are extremely grateful to everyone involved with the MBCproject. To each person with MBC who has signed up, THANK YOU, to our advocacy partners, THANK YOU, to each of you taking the time to read this and be part of #BCSM, THANK YOU.
T1: Please give us an update on the MBCproject
T2: How have patients helped move this project from conception to launch and beyond?
T3: What have you learned so far and what’s next?
T4: What can patients and advocates do to help?
Corrie Painter, Ph.D is the Associate Director of Operations and Scientific Outreach at the Broad Institute of MIT and Harvard. A trained cancer researcher with a Ph.D in biochemistry, Painter partners with advocacy groups in the cancer community to directly engage cancer patients for Broad related research initiatives. Painter, an angiosarcoma survivor, is also a passionate leading patient advocate who co-founded and serves as the Vice President of Angiosarcoma Awareness, an organization that supports research into rare cancers.