Dear Darita ,
Thank you again for signing up for the Metastatic Breast Cancer Project (mbcproject.org). This email is being sent to you, as one of over 2,400 women and men with metastatic breast cancer who have signed up for the MBCproject over the past 9 months. Thanks to ALL of you for your enthusiasm and support — and for your willingness to be a driving force in this project. We have been amazed by the tremendous outpouring of support.
Today, we’re writing to you to tell you about the progress we’ve made to date, and what to expect from the MBCproject over the next few months. We appreciate your patience as our project continues to grow, and we are excited to share the next steps with you.
The Numbers
In the 9 months since the project has launched, we have had over 2,400 of you come to our website at mbcproject.org and click “Count me in!” to enroll in the project -- an incredible response! By now, all of you should have received an email with a link to our online consent form – so far, more than 1,300 of you have signed the consent form giving your permission to us to obtain and analyze copies of your medical records, portions of your leftover tumor samples, and your saliva.
We’ve sent saliva kits to everyone who has signed the consent form (for US and Canada participants for now — we hope to add more countries in the future). To date, we have received back more than 650 saliva kits. And, we are beginning to request more medical records and tumor samples – we have already received hundreds of records and tumor samples over the past few months.
What have we learned so far?
Of the 2,400 people who have enrolled in the MBCproject, more than 95% of you answered the 16-question survey about your cancer and treatments. This information is hugely informative. Here’s what we’ve learned from you:
• Average age of those who have signed up: 52 (ranging from 24 to 91)
• Average age at diagnosis: 45
• Average age at time of metastatic diagnosis: 49
• Average time between initial diagnosis and metastatic diagnosis: 4 years
• Number of patients diagnosed with metastatic disease from onset (“de novo” metastatic disease): >800
• Number of patients who have been alive with metastatic diagnosis for 10 years or longer: >160
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.
And this is just the very beginning of what we’re learning. You’ve also told us a great deal about your cancer types and treatments — including which treatments worked well for you and which didn’t. We’ve also heard many of your stories, about what’s important for you to learn about, and even about issues that we didn’t think to ask about in the first place.
We’ve been sharing much of this information online on Twitter (@mbc_project), on our Facebook page (
https://www.facebook.com/The-Metasta...2059048224675/), and on our blog at
http://mbc-project.blogspot.com. We have lots more to learn from your responses - and we will continue to post what we learn on our blog as well as on Twitter and Facebook.
MBCProject in the news
Many people are taking notice of the project, and are inspired by our partnership with you and our patient advocates. We’ve been excited to have been featured in a number of recent press articles and blog posts, including two articles in The Wall Street Journal (Researchers Take Aim at Metastatic Breast Cancer and New Studies Rely on the Internet for Help Treating Cancer Patients), The New York Times Magazine (Learning from the Lazarus Effect), Fast Company (#Cancer: Researchers are conducting huge studies using Twitter, Facebook) and the Broad Institute blog (Power to the Patients). In addition to this, we are proud to announce that the White House has listed us as one of 40 initiatives that will accelerate precision medicine (Obama Administration Announces Key Actions to Accelerate Precision Medicine Initiative).
We also recently presented the project at the American Society of Clinical Oncology (ASCO) Annual Meeting, where it was extremely well received by both the oncology community and press. You can find a copy of our ASCO poster, as well as slides and video from the press conference on our blog at
http://mbc-project.blogspot.com/2016...t-updates.html.
In March, some of you were able to join us in person to discuss the project, and are featured in this video. If you haven’t yet seen it, please watch and share this video about why the MBCProject is so important to patients and researchers alike (The Metastatic Breast Cancer Project).
What are the next steps?
In the coming months, we’ll continue to collect medical records and tumor samples from everyone who has signed the online consent form and sent in their saliva kit. Genomic sequencing studies on tumor tissue and saliva samples are already underway, and we hope to have our first data analyzed by the end of the year.
We are also in the process of bringing on additional advocacy partners to build our partnerships and expand our reach, and are will continue to work with our current partners and participants to continue to grow. Our advocacy partners include The Metastatic Breast Cancer Network, The Metastatic Breast Cancer Alliance, Avon Foundation, Living Beyond Breast Cancer , Inflammatory Breast Cancer Research Foundation, Young Survival Coalition , SHARE , Male Breast Cancer Coalition , Theresa's Research Foundation, Triple Negative Breast Cancer Foundation, The IBC Network Foundation, Advocates 4 Breast Cancer , METAvivor, MET UP, Tigerlily Foundation, and several more collaborations that are in the works. We feel strongly that the success of the project is because of our combined efforts with you, our patient-participants, and with our advocacy partners, and are continuing to strengthen those relationships.
What can you do to help?
We have been contacted by many of you who are eager to help us accelerate the project. Here are 3 things you can do to help:
1) If you have not yet signed the consent form and if you are willing to share copies of your medical records, portions of your leftover tumor samples, and your saliva, please sign the online consent form that we emailed you. (If you need to find the email, the subject is “Next step for the MBCproject: Sign the consent form”. If you’ve already signed the consent form, you should have an email from us with the subject “Thank you for providing your consent”). If you can’t find the link to your consent form, email us at
info@mbcproject.org and we can send you a new one.
2) If you’ve already signed the consent form and have received your saliva kit (for people living in the US or Canada), please send in your saliva kit. If you lost your kit or need a replacement, email us at
info@mbcproject.org and we can send you a new one.
3) Help spread the word. The MBCProject is a patient-driven research movement. Our biggest enrollment days have been a direct result of your outreach to other patients. We are deeply moved by your contributions and enthusiasm, and we know that the project will continue to grow through patients like you reaching out to other patients. If you’d like to help spread the word, please let other patients with metastatic breast cancer know about mbcproject.org by posting on social media or simply telling others in your community. Many of you have also asked how you can volunteer to further engage patients and expand the project -- if you’d like to do more, please email us at
mbcvolunteers@broadinstitute.org.
For more information
Thank you again for your participation and support. We hope to provide quarterly updates through this email list, and would love your feedback on what aspects of the project you are interested in learning more about. In the meantime, you can find more frequent updates on our blog, twitter feed, and facebook page. You can also find additional information about the project on our FAQ page (
https://www.mbcproject.org/faq).
If you have any questions, feedback, or ideas for the project, please feel free to reach out to us at
info@mbcproject.org or call 617-800-1622.
Peace and Prayers
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