The Metastatic Breast Cancer Project takes a new approach to cancer research in which researchers partner directly with patients, who share their samples and clinical information in order to speed important discoveries. The MBCproject is part of Count Me In , a nonprofit organization that brings together patients and researchers as partners to accelerate discoveries in cancer research. Count Me In is stewarded by four leading organizations: Emerson Collective, a California-based social change organization; the Broad Institute of MIT and Harvard, a leading nonprofit biomedical research institution; the Biden Cancer Initiative, an independent nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute, a leading cancer hospital.
Our goal is to reach out to patients with metastatic breast cancer throughout the USA and Canada in order to study their cancer using cutting-edge genomic and molecular research studies performed at the Broad Institute by allowing patients to participate in these studies regardless of where they live. We are also asking patients from all over the world to sign up so that we can collect information worldwide and eventually expand to additional countries.
Here’s how the project works:
A. Tell us about yourself.
Click “Count Me In” and complete a simple online form to tell us about yourself and your cancer. Our goal is to perform many different studies within the metastatic breast cancer community, so allowing us to know something about your experience will help us design future studies. We will be starting with some focused studies and expanding to new areas of research over time based on what we learn from you. We’ll also ask for your feedback on our initial studies so we can learn how to improve it over time.
B. Give us permission to collect your samples and data.
Once we receive the information that you fill out on our website, we will ask you to fill out an online consent form that requests your permission to obtain copies of your medical records and some of your stored tumor tissue. We’ll also ask you to tell us where you received your medical care so we can contact your doctors and hospitals.
C. We’ll find and request your records and tissue.
Depending on which studies we are conducting at any given time, our team will contact your doctors and hospitals to obtain copies of your medical records and a portion of your stored tumor samples. We will ask pathology departments to share only a part of the tumor tissue, and not to share anything with us that might be needed for clinical care.
D. Send Us a Saliva Kit.
If you live in the USA or Canada, we’ll also send you a simple kit to collect a saliva sample, which will contain “healthy” DNA that can be compared with DNA from your tumor sample.
E. We’ll Analyze Your Tumor and Medical Data.
If we request and obtain your tissue, we will perform cutting-edge, comprehensive genomic analyses on your tumor and saliva sample. Sequencing data we generate will be securely stored in a protected database at the Broad Institute along with information from your medical record. Any information that would make it easy to identify you as an individual will be removed from all genomic and clinical data.
F. We’ll Share the Data with Other Researchers.
Once potentially identifying information has been removed, our database of genomic and medical information (with your identifying information removed) will be shared with the National Institutes of Health and the cancer research community, and will be able to be used for other genomic and molecular studies to help understand metastatic breast cancer and develop new therapies.
G. Learn with us along the way.
We are excited to learn with you! Throughout the project, we will provide all patients who say “Count Me In” with regular updates about the status of the project and information about new studies that we are conducting. We will also share any discoveries from these research projects with you. We also may ask you additional questions about your experience to help with future studies — we want to hear what’s important to you. We will send updates through email, but also through social media. You can follow us on Twitter and on Facebook.
Frequently Asked Questions
1. What is the goal of this project?
This project will connect metastatic breast cancer patients around the world with scientists using cutting-edge technology to study cancer's genetic and molecular causes. Cancer is not a single disease, and each tumor holds part of the puzzle.
Today, very few patients contribute their tumor samples and clinical data to cancer research, largely because they do not have a way of doing so. We believe everyone should have the opportunity to contribute to research, especially now that the combination of genome sequencing and internet-based communication has made it easier to give people that opportunity.
We hope our initial studies will help us understand how genetic mutations in cancer affect response to specific therapies. By discovering the connections between mutations in cancer and responses to therapy, we hope to be able to better design clinical trials and to be able to predict patients' responses to different therapies based on the genomic profiles of their tumors. Over time, we will include other many other studies in metastatic breast cancer so that we can better understand the best strategies for treating this disease.
2. Who is conducting this research?
This project is being conducted by Count Me In, a nonprofit organization that brings together patients & researchers as partners to accelerate discoveries in cancer research. Count Me In is stewarded by four leading organizations: Emerson Collective, a California-based social change organization; the Broad Institute of MIT and Harvard, a leading nonprofit biomedical research institution; the Biden Cancer Initiative, an independent nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute, a leading cancer hospital. The MBCproject also works in collaboration with a growing coalition of non-profit advocacy partners. Our team — led by Dr. Nikhil Wagle, MD, a breast cancer oncologist and metastatic breast cancer researcher — is made up of cancer researchers, physicians, clinical specialists, and patient advocates. Learn more about us here .
3. How have patients been involved in the design of this project?
We have worked closely with patients and patient advocates within the metastatic breast cancer community from the beginning of this project through its design and implementation. Patients have been involved in all aspects including concept, goals, messaging, forms, and even the design of this website. The MBCproject is constantly evolving, and at every turn, we ask for patient feedback to ensure that we are aligned with the metastatic breast cancer community.
We’re proud to have as our Advocacy Partners the MBC Alliance, Avon, the Metastatic Breast Cancer Network, Living Beyond Breast Cancer, the Young Survivors Coalition, the Inflammatory Breast Cancer Research Foundation, SHARE, METAvivor, Theresa's Research Foundation, TigerLily, Triple Negative Breast Cancer Foundation, The IBC Network Foundation, Advocates for Breast Cancer, METup, the Male Breast Cancer Coalition, Susan G. Komen, Breast Cancer Research Foundation, Dr. Susan Love Research Foundation, BCSM: Breast Cancer Social Media, Hope Scarves, The Cancer Couch Foundation, Twisted Pink, Cierra Sisters, BreastCancerTrials.org, Breast Cancer Alliance, The Tutu Project, Metaplastic Breast Cancer Global Alliance, Lobular Breast Cancer Alliance, FORCE, Shay Sharpe’s Pink Wishes, Metastasis Research Society, Sisters R Us Circle of Survivors, Health Ministries Network, the Minority Coalition for Precision Medicine, and Metastatic Breast Cancer Canada.
4. Are there any costs for me to participate?
No, there are no costs to you.
5. After I provide my information, will I be asked to share my tumor tissue and medical records?
We will be conducting many research studies based on the information that you provide. Depending on your medical history and the characteristics of your cancer, we will determine when and if your samples can help answer specific research questions. We will provide you with an online consent form to participate in the study. We will keep your information so that we can determine if you would be a good candidate for future studies.
Regardless of whether we use your samples for our studies, we want to hear your voice and learn about what’s important you. We will keep you informed about our progress along the way.
6. If I am asked to share a tissue sample, will my tissue be used up?
We will take every measure to ensure that your samples are not used up as a result of these studies. We will ask the pathologists who have access to your stored tumor samples to make sure that they share only a small portion with us. If there doesn’t appear to be enough to allow for future clinical testing, we will not request for your samples to be sent to us. If we get what we feel is excess tissue, we will only take what we need and send the rest back.
7. If my tissue and medical records are analyzed, will I receive any information back from this study?
Because our sequencing tests are performed in a research lab and not a clinical lab, we are not currently permitted to return personal genetic data to you. However, We will regularly update you with key discoveries that we make about this disease, overall results, and progress made through this research.
This is an evolving project and we hope to learn from you what the most meaningful form of returning personal results would be, if we were permitted to do so. We will be asking for your feedback so that we can understand what type of data you are interested in receiving.
8. Is this research being conducted for profit?
No. This project is a not-for-profit, academic research endeavor. Our mission is to generate data to Freely share in a way that protects your personal information with the research community in order to fuel scientific discoveries.
9. Is there information that I can bring to my doctor so that I can discuss this study with them?
Yes, you can print out or use your mobile device to share the document linked here: Metastatic Breast Cancer Project For Physicians
10. Where can I find the most recent aggregate data that's been presented?
The most recent aggregate data presented can be found on our blog at http://mbc-project.blogspot.com.
Do you have other questions?
You can access a 1 page printable information sheet about the project linked here: The Metastatic Breast Cancer Project