PROMISE Study: Registry of PCa Genetics and Outcomes

Great.. thank you

Reminder: PROMISE Annual Webinar is TODAY

Advanced Treatment Options & Understanding Variant Classifications, March 19th, 2025, from 6:00 PM to 7:00 PM EST / 3:00 PM to 4:00 PM PST.
Presentation to include time for live questions.

Participants: check your email for the webinar registration link.

Read the Promise disclosure carefully. Choose wisely.
Authorization to Use or Disclose (Release) Health Information that
Identifies You for a Research Study
If you sign this document, you give permission to the PROMISE Registry study team to use or
disclose (release) your health information that identifies you for the research study described
above.
The health information that we may use or disclose (release) for this research includes all
information in your medical record held by the cancer care provider(s) that you share with us.
The health information listed above may be used by and/or disclosed (released) to the research
sponsor, the Prostate Cancer Clinical Trials Consortium, LLC, and the other groups listed above
in the section “What happens to the information collected for this research?”
The Prostate Cancer Clinical Trials Consortium, LLC is required by law to protect your health
information. By signing this document, you authorize the Prostate Cancer Clinical Trials
Consortium, LLC to use and/or disclose (release) your health information for this research.
Those persons who receive your health information may not be required by Federal privacy laws
(such as the Privacy Rule) to protect it and may share your information with others without your
permission, if permitted by laws governing them.
Please note that you do not have to sign this Authorization, but if you do not, you may not
receive the research-related intervention.
Please note that you may change your mind and revoke (take back) this Authorization at any
time. Even if you revoke this Authorization, the Prostate Cancer Clinical Trials Consortium,
LLC maystill use or disclose health information they already have obtained about you as
necessary to maintain the integrity or reliability of the current research. To revoke this
Authorization, you must write to: pcctcpromise@mskcc.org
Statement of Consent:
I have read this consent form (or it has been read to me). All my questions about the stud

It's hard to remember the last time anaything I did was not covered by some written or implied use authorization, disclosure or limit of liability form. In addition, our personal information has been hacked from healthcare providers, both large and small, and insurance companies, most recently 100 million people's private health care information stolen, without any permission or use authorization whatsoever. My benefit from it is 12 months of free credit monitoring.

When it comes to clinical trials in search of the next breakthrough treatment or cure for the cancer that plagues us; it simply isn't going to happen without patient participation. You are correct, there is a risk. Each of us can choose to decline to participate in hopes that others will take the risk and shoulder the responsibility; in which case the the study might not happen or the next breakthrough could be delayed due to lack of participation. Or, I can accept the limited risk, do my part to advance the science for my benefit, that of my family ( I can make them aware of potential hereditary diseases) and the families of everyone else who is, or will be, afflicted with prostate cancer. All of the treatments available to us today are there because those who came before us opted to take the risk. For me, it was a slam dunk decision. I hope others will continue to accept the risk required to end prostate cancer, as well.
Bill

I'm potentially interested but am having trouble what you previously posted as their privacy policy versus: "Your name and identifying information will always be kept private. We will never share study reports that provide personal details about any specific individual."

with what @chippydoo posted: "Those persons who receive your health information may not be required by Federal privacy laws (such as the Privacy Rule) to protect it and may share your information with others without your permission, if permitted by laws governing them."

Yes, I've been among the millions impacted by data breaches but as far as I'm concerned, there is no reason for a research study to share or disclose medical information that has not been de-identified.

So is the Promise project only collecting and then disclosing de-identified data or not? Thanks so much.

Admittedly my memory ain’t what it used to be - but did I already sign up for this under a different name “Color” as recommended on this site? If so, are all y’all signing up for both? Thx

@billkmed
It sounds like you are already participating, as you suggested. Color is the lab that does the DNA anaysis for this study.

My personal approach to prostate cancer, the diagnosis, grading, treatment options and side effects as well as outcomes is to do my own due diligence.

This held true for the Promise Prostate Registry. When diagnosed with PCa, I went to the Fred Hutchinson Cancer Center Clinical Trial webpage for Prostate Cancer and read through the study listings (currently 61). One of those that I was able to participate in, at that early stage, was PROMISE Registry: A Prostate Cancer Registry of Outcomes and Germline Mutations for Improved Survival and Treatment Effectiveness. I the information on the following webpages and links they contained, all relevant to the study:
https://www.prostatecancerpromise.org/
https://home.color.com/pharma/promise
Color: Informed Consent for Genetic Testing
https://www.color.com/informed-consent
https://www.clinicaltrials.gov/study/NCT04995198
Where I obtained the following contact information at Memorial Sloan Kettering:
Study Contact
Name: Jacob Vinson
Phone Number:
646-449-3363
Email: pcctcpromise@mskcc.org

Study Sponsor
https://www.pcctc.org/
From these sites and from conversations with staff at both Color and the study contacts at both Memorial Sloan Kettering, I am comfortable that my DNA and health information was protected; and that only anonymized genetic and relevant healthcare data would ever be disemminated. That said, I am not the brightest guy in the world, so do your own due diligence. My cost benefit analysis indicated it was best to opt into participation in the study to move the science of prostate cancer genetics forward.
Hopefully, your due diligence will come to the same conslusion.
All the best,
Bill

We sent the sample last week. Breach might happen or might not, if not in this lab than it could happen in doctor's office or insurance carrier or what not. The fact that lab might send info willingly to third party is troubling but at this point we personally do not care *sigh. Honestly, pros of having this genetic test done for us is bigger than cons of possibility that DNA sample ends in some pharma lab. But thanks Chippy for posting that ! It is important info.

@surftohealth88
You have likely seen this already, but the study linked below, while not a ray of sunshine, does shed some light onto the genetics of cribform and IDC-P. This might help you formulate questions for discussion with the genetic counselor from Promise.
Bill
https://www.sciencedirect.com/science/article/pii/S0893395222002629#bib27