This post shared details on the progress they’ve made to date, and what to expect from the MBCproject over the next few months. The project continues to grow, and I am excited to share the next steps with you.
In the 9 months since the project has launched, over 2,400 have come to their website at mbcproject.org and clicked “Count me in!” to enroll in the project -- an incredible response! By now, most of those should have received an email with a link to the online consent form – so far, more than 1,300 have signed the consent form (Debbie has) giving them permission to obtain and analyze copies of medical records, portions of leftover tumor samples, and saliva.
Saliva kits have been sent to everyone who has signed the consent form (for US and Canada participants for now — they hope to add more countries in the future). To date, more than 650 saliva kits have been returned (including Debbie's). And, they are beginning to request more medical records and tumor samples – they have already received hundreds of records and tumor samples over the past few months.
What has been learned so far?
- 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 frame how we are going to ask and answer key biological questions on this disease.
And this is just the very beginning of what is being learned. They've also learned a great deal about cancer types and treatments — including which treatments worked well and which didn’t. They've heard many stories, about what’s important for patients to learn about, and even about issues that we didn’t think to ask about in the first place.
Much of this information has been shared online on Twitter (@mbc_project), on the Facebook page (https://www.facebook.com/The-Metastatic-Breast-Cancer-Project-852059048224675/), and on the blog at http://mbc-project.blogspot.com. There is lots more to learn from your responses - and MBCProject will continue to post what is learned on their blog as well as on Twitter and Facebook.
MBCProject in the news
The project was recently presented 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 the ASCO poster, as well as slides and video from the press conference on the blog at http://mbc-project.blogspot.com/2016/07/mbcproject-updates.html.
In March, some were able to participate in person to discuss the project, and are featured in the 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?
MBCProject is in the process of bringing on additional advocacy partners to build partnerships and expand their reach, and will continue to work with current partners and participants to continue to grow. 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. The success of the project is because of the combined efforts with all, patient-participants, and with advocacy partners, and are continuing to strengthen those relationships.
What can you 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. (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 with the subject “Thank you for providing your consent”). If you can’t find the link to your consent form, email MBCProject at firstname.lastname@example.org and they will 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 them at email@example.com and they will send you a new one.
3) Help spread the word. The MBCProject is a patient-driven research movement. Biggest enrollment days have been a direct result of outreach to other patients. 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 them at firstname.lastname@example.org.
For more information
They hope to provide quarterly updates through email, and would love feedback on what aspects of the project you are interested in learning more about. In the meantime, you can find more frequent updates on the 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 MBCProject at email@example.com or call 617-800-1622.
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