1. < Prostate Cancer

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 | @dailyeffort | Jun 12 10:18am
In reply to @brian5837 "Here's what it says: "Cancer care provider contact information This information is required. The PROMISE Registry..." + (show)
@brian5837

Here's what it says: "Cancer care provider contact information
This information is required.

The PROMISE Registry team will contact at least one of your recent cancer care providers in order to obtain past and future medical records. You can give contact information for up to five providers."

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Here is a link to the NIH page for the "Promise" clinical trial. It has both phone and email contact information and would likely be a good resource for answers to your questions. https://www.clinicaltrials.gov/study/NCT04995198
Bill

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1 reply
jeff Marchi | @jeffmarc | Jun 12 10:23am
In reply to @brian5837 "Jeff, when I went to sign up, it is required to provide the medical provider's name..." + (show)
@brian5837

Jeff, when I went to sign up, it is required to provide the medical provider's name so they can get the medical records. I don't want the doctors involved as you suggest but I don't see anyone around that. Do you?

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There is a check box that you checked to say you want your doctor involved. You must have checked it. Go back in fresh and do not check that box.

You did go to

Prostatecancerpromise.org

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brian5837 | @brian5837 | Jun 12 11:41am

There is no such box to check or uncheck. I specified that I had had a tissue biopsy. Provider information is required. Maybe they have changed it?

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2 replies
brian5837 | @brian5837 | Jun 12 11:44am
In reply to @dailyeffort "Here is a link to the NIH page for the "Promise" clinical trial. It has both..." + (show)
@dailyeffort

Here is a link to the NIH page for the "Promise" clinical trial. It has both phone and email contact information and would likely be a good resource for answers to your questions. https://www.clinicaltrials.gov/study/NCT04995198
Bill

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Thanks. It says the same thing. "PROMISE Registry staff will request medical records from the participant's cancer care provider(s) for the purpose of obtaining clinical data."

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surftohealth88 | @surftohealth88 | Jun 12 2:36pm
In reply to @brian5837 "There is no such box to check or uncheck. I specified that I had had a..." + (show)
@brian5837

There is no such box to check or uncheck. I specified that I had had a tissue biopsy. Provider information is required. Maybe they have changed it?

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That could be the case *hmmm. We did this test for my husband maybe 2 mos ago (?) , I forgot exact date and there was still an option of not involving a doctor.

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brian5837 | @brian5837 | Jun 12 4:33pm

Ok, so I think we have been conflating two different questions about medical providers and Promise. There is during registration the option not to share results with your provider. But there's no option not to provide medical providers' information during registration so that Promise can obtain the medical records it wants from that provider. "If you qualify for our study, we’ll need your provider’s information in order to request and receive your medical records as part of your participation in the Promise study."

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1 reply
jeff Marchi | @jeffmarc | Jun 12 4:51pm
In reply to @brian5837 "There is no such box to check or uncheck. I specified that I had had a..." + (show)
@brian5837

There is no such box to check or uncheck. I specified that I had had a tissue biopsy. Provider information is required. Maybe they have changed it?

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You don’t want a tissue biopsy. You want the normal way they do it with a spit tube.

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brian5837 | @brian5837 | Jun 12 5:40pm

Jeff,

The tissue biopsy question is in response to how you confirmed prostate cancer in order to qualify for the study.

The spit tube is how the DNA would be collected.

Two different things.

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jeff Marchi | @jeffmarc | Jun 12 5:49pm
In reply to @brian5837 "Ok, so I think we have been conflating two different questions about medical providers and Promise...." + (show)
@brian5837

Ok, so I think we have been conflating two different questions about medical providers and Promise. There is during registration the option not to share results with your provider. But there's no option not to provide medical providers' information during registration so that Promise can obtain the medical records it wants from that provider. "If you qualify for our study, we’ll need your provider’s information in order to request and receive your medical records as part of your participation in the Promise study."

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I think you’ve answered the question finally. It’s been a long time since I used that promise study. You just want to make sure you don’t check the box to have your provider involved. Forgot about having to give the information at the end, makes sense.

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chippydoo | @chippydoo | Jun 13 8:49am
In reply to @vonsm01 "First, thank you all for your experiences on the journey no one wants to be on!..." + (show)
@vonsm01

First, thank you all for your experiences on the journey no one wants to be on!
I was also curious as well when I found the PROMISE Study in the forum and signed up.

Hereby my experience with the Color genetic kit, all within a month.
Check the Discovery section in your Color account if you have not received an email notification for the complimentary genetic insights. Probably good to have your Health history added in your Color account and maybe future insights will be shared when available. My Western European descent confirmed 🙂

4/29/2025 Signed up + Add health history + Your Color genetic kit has shipped
5/02/2025 Your package has been delivered!
5/05/2025 A physician has approved your Hereditary Cancer Test
5/07/2025 Shipped back Color kit
5/12/2025 We have received your Color kit
5/27/2025 Your new complimentary genetic insights from Color Discovery

Ancestry
Genetic Ancestry
Where in the world did your genes come from?

Traits

Alcohol flush response
Some people process alcohol more efficiently than others.

Bitter taste perception
Learn what your genes can tell you about how you taste bitter things.

Cilantro preference
Your genes play a role in whether you love cilantro or think it tastes like soap.

Earwax type
Flaky or sticky? Earwax type is encoded in your genes.

Lactose intolerance
Your genes have a say in how well you digest lactose products like milk.

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That sounds like 23 and me not a cancer genetic test.

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