In metastatic cancer, cells break away from the original tumour and travel around the body via the circulatory or lymphatic system. Source: NHGRI

The Metastatic Breast Cancer (MBC) Project has completed its first public data release, an event that coincides with the Project’s second anniversary and the recruitment of their 4,000 participant. The dataset, which is available through the MBC Project’s website, contains participants’ de-identified genomic data, treatment history, medical records, and personal accounts of their treatment. This release is planned to be the first of a regular release cycle, with new data being published every six months.

The MBC Project was launched in October 2015 by the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute, and a coalition of non-profit partners, with the intention of promoting patient involvement in research. There are currently around 155,000 women in the USA with metastatic breast cancer and the disease is responsible for roughly 40,000 deaths each year, accounting for 14% of female cancer deaths.

Because many metastatic breast cancer patients receive treatment at clinics that do not support tumour tissue research, previous studies of the disease have struggled to amass large enough patient cohorts. The project is a crowd-sourced, social media-driven attempt at involving a large number of patients in research directly by making them partners in the process. It quickly became apparent that the patients were keen to involve themselves, as evidenced by the 2,000 US participants who signed up in the first 7 months of the project.

“Patients have had an enormous impact on the project’s evolution, including its design and implementation, from even before it had a name,” said Corrie Painter, PhD, Associate Director of Operations and Scientific Outreach for the project. “Their enthusiasm had a ripple effect that allowed us to expand far beyond what we had originally thought we could do.”

Now, more than 3,900 patients have completed the project’s survey for gathering demographic and medical information. Over 2,400 of those participants have given permission for the researchers to access their biological samples and 1,400 of those have provided the team with saliva samples. It is using data from these participants that the team have put together their public release. The first dataset, which is freely available in the public, consists of whole exome sequencing data for 103 tumours from 78 patients, alongside the patients’ self-reported experience information.

This release is an important milestone for the project, and indicates how successful the project may be in future at furthering metastatic breast cancer research.

“At two years, we can now say that we have all the pieces, and all the pieces work,” said Nikhil Wagle, MD, Director of the MBC Project and Medical Oncologist at Dana-Farber. “We can engage, register, and obtain consent from patients. We can access and abstract medical records. We can take in, process, and sequence tumour tissue and saliva. And we can put the end deliverable – data – out there for the world to use. Everything is feasible, which two years ago was not obvious.

“Going forward we have to push to scale up and start making discoveries. We feel the urgency, we want to go faster. And we know the patients are willing to go with us as fast as we’re able to take them.”