What's Next for the MBCproject?

Thank you to everyone who has signed up for the Metastatic Breast Cancer Project (mbcproject.org).  To date, more than 1100 women and men with metastatic breast cancer have signed up for the MBCproject over the past 3 months.  We have been amazed by everyone's enthusiasm for this project — and for your willingness to get involved.  We are incredibly grateful for the tremendous outpouring of support.  

In this post, we wanted to talk about the progress we’ve made to date, and what to expect from the MBCproject over the next several weeks.  We appreciate everyone's patience over the past few months as we’ve ramped up this project to register the first 1000 patients, and are excited to share the next steps with you.

What have we learned so far?

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. And this is just the very beginning of what we’re learning.

We’ve also learned a great deal from your responses 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 data online on Twitter (@mbc_project) and on our Facebook page.  We also presented a lot of this data at the 2015 San Antonio Breast Cancer Symposium — you can see our poster here. Going forwards, you can find all of this data and any new data on this blog.  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.

What are the next steps?

In the next few weeks, we’ll be sending you an email with a link to our online consent form.  This online consent form asks you for your permission to collect a saliva sample, as well as copies of your medical records and a portion of your tumor tissue from the hospital where it is stored.  Once you sign this online consent form, we’ll send a saliva kit to your home (for US and Canada participants for now — we are working on more countries).  When you receive the saliva kit, all you have to do is provide a saliva sample in the enclosed tube and drop it in the mail (postage is already paid).   After that, we will do the rest of the work — you won’t have to track down your tissue or records.  Our team will work on obtaining medical records and tumor samples from hospitals and doctors to study a wide variety of questions about metastatic breast cancer.

We’ll be sending consent forms to everyone who has signed up for the MBCproject.  And although we originally planned to send saliva kits to only a small group of participants, we’re excited to now be able to send saliva kits to *all* participants living in the U.S. and Canada.  This expansion is thanks in large part to the overwhelming positive response and engagement from the community of patients with metastatic breast cancer.  If you don’t live in the US or Canada, we’re still hoping you’ll sign the online consent form to participate as we develop the ability to request samples from additional countries.

In addition to the consent forms and saliva kits, we also have some new and exciting parts of the #MBCproject that we hope to roll out in the next few months as well — we’ll send more information on that in the coming weeks.

What if I have questions or need more information?

If you have any questions about the MBCproject, please email us at info@mbcproject.org of call 617-800-1622.  You can find additional information on our FAQ page and this blog.

Thank you again for your participation and support.  Thanks also to the many patients, advocates, and organizations who have worked with us over the past year to design and launch this project.  

We’ll email consent forms over the next several weeks, and we will then send saliva kits to those who provide consent.  We look forward to working together with you on this.