PROMISE Study: Registry of PCa Genetics and Outcomes

Posted by dailyeffort @dailyeffort, Mar 12 9:17pm

Many of us on MCC have joined this important study (not the same as Decipher testing), and hope you will consider doing so.
PROMISE is a registry of prostate cancer patients participating in a research study to learn how genetic differences can affect patient outcomes. In the fight against prostate cancer, your DNA may be the most powerful tool. Participation is free, registration is done online and a saliva collection kit is sent to you. You enclose a sample, return it by mail. You’ll get information, tailored to your DNA, to better understand potential treatment options and genetic risk.
Here is a link to learn more about the study and why hereditary cancer gene testing is important to you individually, and to the future treatment of Prostate Cancer. https://www.prostatecancerpromise.org/

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@dailyeffort

@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

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Thank you so much for the link Bill < 3. I printed it and it will go into my folder for future reference and I will have to look into FLAME research that is mentioned in this article.

Our genetic test results came late evening yesterday and my husband has no mutations detected.

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Thank you for sharing!
I have sent my sample as well this week and looking forward to the results.

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I had my genetic counselor phone call yesterday. It went very well and was very informative. I had no genetic mutations related to prostate cancer for the group of genes that COLOR looks at. The counselor told me there is one gene they do not look at at this time (HOXB13) that is of growing interest as it relates to prostate cancer. I also learned that there are other genetic tests for cardiac disease and how the body breaks down and handles medications. COLOR, I assume has a website which I've not yet visited to see what else they offer in the way of genetic testing (of course these other tests won't likely be free). I also learned that COLOR and Promise work in partnership but are separate entities. Promise is the prostate cancer study. COLOR is the lab that does their genetic testing.

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@pdcar4756

I had my genetic counselor phone call yesterday. It went very well and was very informative. I had no genetic mutations related to prostate cancer for the group of genes that COLOR looks at. The counselor told me there is one gene they do not look at at this time (HOXB13) that is of growing interest as it relates to prostate cancer. I also learned that there are other genetic tests for cardiac disease and how the body breaks down and handles medications. COLOR, I assume has a website which I've not yet visited to see what else they offer in the way of genetic testing (of course these other tests won't likely be free). I also learned that COLOR and Promise work in partnership but are separate entities. Promise is the prostate cancer study. COLOR is the lab that does their genetic testing.

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I was real surprised when Promise sent me a map that shows where in the world my family came from, with the percentages of each country mostly broken down.

Took them at least a year before they sent the map, but it was real good information to have.

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@pdcar4756

I had my genetic counselor phone call yesterday. It went very well and was very informative. I had no genetic mutations related to prostate cancer for the group of genes that COLOR looks at. The counselor told me there is one gene they do not look at at this time (HOXB13) that is of growing interest as it relates to prostate cancer. I also learned that there are other genetic tests for cardiac disease and how the body breaks down and handles medications. COLOR, I assume has a website which I've not yet visited to see what else they offer in the way of genetic testing (of course these other tests won't likely be free). I also learned that COLOR and Promise work in partnership but are separate entities. Promise is the prostate cancer study. COLOR is the lab that does their genetic testing.

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Hi @pdcar4756 Thanks for sharing some of the information from your call with the genetic counselor! Below is a link to a 2022 publication reporting results from ongoing research (hopefully if funding is still intact) on HOXB13 as it pertains to prostate cancer and potential therapies.
https://news.feinberg.northwestern.edu/2022/05/10/new-regulator-of-prostate-cancer-metastasis-discovered/#:~:text=HOXB13%20is%20a%20prostate%2Dspecific,are%20the%20mainstay%20of%20care.
Bill

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@dailyeffort

Hi @pdcar4756 Thanks for sharing some of the information from your call with the genetic counselor! Below is a link to a 2022 publication reporting results from ongoing research (hopefully if funding is still intact) on HOXB13 as it pertains to prostate cancer and potential therapies.
https://news.feinberg.northwestern.edu/2022/05/10/new-regulator-of-prostate-cancer-metastasis-discovered/#:~:text=HOXB13%20is%20a%20prostate%2Dspecific,are%20the%20mainstay%20of%20care.
Bill

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Thank you Bill!

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@dailyeffort

There is no cost to study participants. Here is the relevant text from the Promise Registry FAQ;
PROMISE is completely free for patients. There is no cost for the at-home DNA test, genetic counselor appointment, and the newsletter updates.

In addition to the newsletter updates, Promise has an annual live streamed webinar with the opportunity to ask questions.

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How does this differ from the Helix Molecular Test?

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@rjnoonan

How does this differ from the Helix Molecular Test?

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Helix does not appear to detect a lot of the genetic issues that are found in a standard hereditary genetic test. BRCA is one thing they do detect and hey also detect Lynch syndrome, and some other things that the hereditary test doesn’t detect.

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@jeffmarc

One even better thing that I got out of the promise study,

They sent me a map marked with all of the countries my genetic study showed my family originated from. In my case it was 100% Europe, but all over Europe.

If you have prostate cancer and live in the United States, you can get an hereditary blood test for free and find out where your ancestors came from.

I didn’t get the map until a couple years after the initial blood test, I bet they do it quicker for people now.

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When was that? I was looking forward to receiving this but they did not send it with my results.

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@topf

When was that? I was looking forward to receiving this but they did not send it with my results.

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I guess you missed it. I didn’t receive that breakdown of where my family is from, in the world, for about a year after my promise test.

Hopefully, they are still doing it, but it may take a while.

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