In an earlier post as well as one of Cancer ABCs podcasts we introduced the Metastatic Prostate Cancer Project. As was promised the Project has begun to offer feedback to all who participate. Since the project only began a few months ago we do not yet have genetic material to feed back, but we can happily report the large numbers of men who have elected to be "Counted In."
Despite our outstanding start we need more men to sign on and be "Counted In." Pleas join us at mpcproject.org. Step up and be counted in.
Thank you for joining the Metastatic Prostate Cancer Project (mpcproject.org). This email is being sent to you along with over 475 men with metastatic or advanced prostate cancer who have visited mpcproject.org and clicked “Count Me In” to join the project since January. Thank you to all of you for your enthusiasm and support, and your willingness to be a driving force in this project. We would like to share the progress that we have made to date and what to expect from the MPCproject over the next few months.
Over 390 of you have signed the consent form, allowing us to obtain and analyze copies of your medical records, portions of your leftover tumor samples, your blood samples, and your saliva samples. Thanks to your generosity, we have received:
- 275 saliva kits
- 250 medical records
- 80 blood samples
- 17 tissue samples
We have now initiated the genetic profiling of the first batch of samples we have obtained. We will link these results with data generated from surveys and medical records in order to generate a de-identified, shared resource that will enable the biomedical research community to make discoveries.
What have we learned so far?
More than 90% of those enrolled answered the short survey. Here’s what we’ve learned from you:
- Average age of those who have signed up: 68 (ranging from 40 to 92)
- Average age at diagnosis: 61
- Number of patients diagnosed with metastatic disease from onset: >190
- Number of patients who have lived with prostate cancer for 10 years or longer: >100
You have also told us a great deal about your treatments, your disease status, and your lifestyle changes. We have also heard many of your stories and what’s important for you to learn about, which has given us great insight into new questions to ask in the future. All of this is very important information for metastatic prostate cancer research and helps us frame how we are going to ask and answer key scientific questions in this disease.
Your patient-reported data has already defined a new research question that we plan to ask in this project, specifically focused on the genetics of patients who have lived with prostate cancer for over a decade.
Importantly, this projects depends on you and your fellow prostate cancer survivors to make it successful. If you have any questions, please do not hesitate to reach out to us at email@example.com. Follow us for continued updates on Twitter (https://twitter.com/prcaproject) and Facebook (https://www.facebook.com/MetastaticProstateCancerProject/), and please feel free to share the project in your communities.
Eliezer Van Allen, MD