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Study Description

Count Me In - The Metastatic Breast Cancer Project: A Patient-Driven Research Initiative to Accelerate Metastatic Breast Cancer Research

The Metastatic Breast Cancer Project (MBCproject; mbcproject.org) is a research study that directly engages patients with metastatic breast cancer via social media and advocacy groups and empowers them to accelerate cancer research by sharing their samples and clinical information. The goal is to create a publicly available dataset of genomic, molecular, clinical, and patient-reported data to enable research. Patients in the US or Canada may register online. Registered patients are sent an online consent form that asks for permission to obtain and analyze their medical records, tumor tissue, saliva, and blood samples. Once enrolled, patients are sent a saliva kit and asked to mail back a saliva sample, which is used to extract germline DNA. Study staff contact participants' medical providers and obtain medical records and a portion of their stored tumor biopsies. Patients may be asked to mail in a blood sample, which is used to extract cell free DNA (cfDNA). Whole exome sequencing (WES) is performed on tumor DNA, germline DNA, and cfNDA; transcriptome sequencing is performed on tumor RNA. Clinically annotated genomic data are used to study specific patient cohorts (including outliers) and to identify mechanisms of response and resistance to therapies. All de-identified data, including genomic, clinical, and patient-reported data, are shared via public databases on a pre-publication and recurring basis as it is generated. Study updates are shared with participants regularly.

Authorized Access
Publicly Available Data
  Link to other NCBI resources related to this study
Study Inclusion/Exclusion Criteria

Patients who have ever had a diagnosis of metastatic breast cancer and reside in the US and Canada can choose to enroll themselves directly in the study via https://www.mbcproject.org. Online informed consent was obtained from each patient. This study is approved by the Dana-Farber Cancer Institute IRB under protocol 15-057B.

Molecular Data
TypeSourcePlatformNumber of Oligos/SNPsSNP Batch IdComment
Whole Exome Sequencing Illumina ICE Capture Reagent N/A N/A
RNA Sequencing Illumina TruSeq RNA Library Preparation Kit V2 N/A N/A
Selected Publications
Diseases/Traits Related to Study (MeSH terms)
Authorized Data Access Requests
Study Attribution
  • Principal Investigator
    • Nikhil Wagle, MD. Broad Institute/Dana Farber Cancer Institute, Cambridge, MA, USA.
  • Funding Source
    • Institutional Funding. Broad Institute, Cambridge, MA, USA.