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PROMISE Study: Registry of PCa Genetics and Outcomes

Prostate Cancer | Last Active: Jun 13 8:49am | Replies (50)
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@brian5837

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.

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Replies to "I'm potentially interested but am having trouble what you previously posted as their privacy policy versus:..."
dailyeffort | @dailyeffort | Mar 30 1:13pm

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

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